spring 2015
connected
For families with disabled children and all those who work with them
Home
sweet
home
we put families in the spotlight
with our photography exhibition
campaign victories
we care about rare!
Counting the Costs has
achieved two campaign wins,
read how we did it
Our theme this spring is
rare conditions. Parents
share their stories
the care act 2014
Came into force on
1 April – read about how the
changes may affect you
In this issue...
welcome
cover story
3Update from our Chief
12Everyday people
Executive, Amanda Batten
Take a peek at our Pictures
from Home exhibition
The best care for Lyla
23
Katie Yarwood waits for a
diagnosis for her daughter
24 A world-wide web of
possibilities
Connecting parents on the
internet
NEWS
4Victories for our Counting
rare conditions special
the Costs campaign
by Una Summerson
Nicole had to quit school after
being diagnosed with cancer
5Supreme Court hears ‘Stop
News from the world of rare
27
the DLA takeaway’ appeal
conditions
6Stop bullying for all!
Top tips and rare condition
28
Angie Fenn on our anti-bullying
project
8Benefits news
Derek Sinclair, senior
welfare rights adviser
resources
14We care about rare!
Intro to our theme by Lucy Pratt
9 Parent carer participation
You are not alone
16
A better solution
10
17Life’s a journey, not a
Influencing local services in
England by Sue North
interview with Samiya and
Naveed of Andiamo orthotics
Finding my feet again
26
How a closed Facebook group
has helped in Cornwall
destination
Ruby Edwards’ son has a rare
blood condition – she shares
her story with us
We just wanted to talk to
18
other parents
Sue Routledge sets up the first
Pitt Hopkins support group
20 What’s in a name?
Karin Beeler on why words
count
21 Looking for answers
Tracy Milne searches for a
diagnosis for her son Alfie
11Could you change the
outcome of the election?
Ellen Clifford of Inclusion
London
22 We are the 22q-ommunity!
Gillian Cassidy is lobbying to set
up the first clinic of its kind in
the UK
The Care Act 2014
29
by Caroline Barrett, Solicitor
at Irwin Mitchell Solicitors
Local Groups Network
30Support groups in your area
connected magazine
Edited by Karin Beeler and Lucy Pratt News editor Nathalie de Broglio
[email protected] Design johnclarksondesign.co.uk Print RAP Spiderweb Ltd
Note: The views, opinions, and content in Connected do not necessarily reflect the views, opinions, or policies of Contact a Family. Contact a Family
policy statements are always clearly identified. The listing of resources is for information purposes and does not constitute endorsement by Contact a
Family. © Contact a Family 2014. Registered Office: 209–211 City Road, London EC1V 1JN. Registered Charity Number: 284912. Charity registered in
Scotland Number: SC039169. Company limited by guarantee. Registered in England and Wales No. 1633333. VAT Registration No. GB 749 3846 82
2
connected Spring 2015
that have joined us
welcome
www.cafamily.org.uk
Freephone helpline:
0808 808 3555
Contact a Family
209–211 City Road, London EC1V 1JN
020 7608 8700, Fax: 020 7608 8701
[email protected]
Contact a Family Northern Ireland
Bridge Community Centre, 50 Railway
Street Lisburn BT28 1XP
028 9262 7552
[email protected]
Contact a Family Scotland
Craigmillar Social Enterprise & Arts Centre
11/9 Harewood Road, Edinburgh EH16 4NT
0131 659 2930
[email protected]
Contact a Family Cymru
33–35 Cathedral Road, Cardiff CF11 9HB
029 2039 6624
[email protected]
Contact a Family North East England
The Dene Centre, Castle Farm Road
Newcastle upon Tyne NE3 1PH
0191 213 6300
[email protected]
Contact a Family Midlands
Prospect Hall, 12 College Walk
Selly Oak, Birmingham B29 6LE
0121 415 4624, Fax: 0121 415 4922
[email protected]
Contact a Family Ealing and Southall
Lido Centre, 63 Mattock Lane,
London W13 9LA
020 8280 2267
[email protected]
St. Georges Community Centre
8–12 Lancaster Road, Southall UB1 1NW
020 8571 6381, Fax: 020 8571 6400
[email protected]
Contact a Family Lambeth
336 Brixton Road, London SW9 7AA
020 7326 5270
[email protected]
Contact a Family Lewisham
Leemore Central Community Hub
Bonfield Road London SE13 5EU
020 8297 8056
[email protected]
Contact a Family Southwark
Cambridge House, 1 Addington Square
London SE5 0HF
020 7358 7799
[email protected]
Contact a Family Wandsworth
1 Siward Road, London SW17 0LA
020 8947 5260, Fax: 020 8947 9506
[email protected]
Supporting families with
rare conditions
Update from our Chief Executive
Officer, Amanda Batten
Contact a Family was founded
by parents of children with rare
conditions in the 1970s. I’m really
proud of this. Whilst we’ve grown
since then to support families with
disabled children whatever their
condition, our work with families
with rare conditions is still very
important to us today.
Strength and
support is found in
sharing experiences
with each other
The parents’ stories in this edition from Ruby, Sue, Gillian and
Katie provide a real insight into the rewards and challenges of
being a parent of a child with a rare condition. All of their stories
reflect the remarkable women they are.
In terms of the future, if Contact a Family is to continue to
be there for families we need to raise the vital funds to sustain
and grow the support we provide. With cuts in government
spending this is more important than ever. So on a personal
level, I’m doing my bit by signing up to the Hackney half
marathon in May. I’m getting a bit concerned about this, as
I only started training at the end of March. So wish me luck
– or you can get involved in fundraising for us yourself – you
can fundraise by doing almost anything!
What is clear from reading parents’ stories in this edition
of Connected is that, whilst their journeys have been very
different, there are real parallels. I bet if they all got together in
room, they’d have plenty to talk about! The parents that started
Contact a Family understood this – even if their children’s
conditions are different, there is a commonality of experience,
emotional and practical, of being a family with a disabled child.
And strength and support is found in sharing experiences with
each other. This principle remains at the heart of who we are as
an organisation and is central to our new strategy for the future.
Amanda Batten
connected Spring 2015
3
news
Policy & campaigns update from Our campaign manager Una Summerson
Victories
for our
Counting
the Costs
campaign!
Parent carers and their allies
are helping secure changes to
improve the lives of families
with disabled children in the UK
Our Counting the Costs campaign
has landed its first major win: the
government is extending the Warm
Home Discount Scheme and
standardising it across suppliers.
This will make it easier for low
income families with disabled children
to get a rebate of £140 on their
electricity bill next winter.
This is a good start but not all
suppliers are part of the Warm Home
Discount scheme, and Contact a
Laura Robinson with sons Ellis and Harvey and gran Lynne Day
supporting our Counting the Costs campaign launch in Parliament
Family wants the discount to be
available to all families with disabled
children, whatever their income. So
we still need your help to make this
happen. Please ask your friends,
families and colleagues to take action
by sending our campaign email to
your local MP (see page 5).
We achieved another big win in
February. The government announced
that the tax-free childcare scheme has
been extended to recognise the
higher-than-average childcare costs
that many families with disabled
children face. Hopefully, this will go
some way to alleviate the stresses
and strains that families are faced
with, when caring for and supporting
disabled children. Thank you everyone
for supporting our Counting the Costs
campaign. Together we can reverse
the alarming increase in families with
disabled children going without food
and heating.
What’s the campaign all about?
Our Counting the Costs campaign
was launched in November 2014.
Over 60 MPs are supporting the
campaign so far. We achieved this
thanks to over 1,000 parents and
friends of Contact a Family
contacting their local MP and asking
for their support.
Poverty should not be an
inevitable consequence of having
a disabled child as it is now for so
many families in the UK. This
campaign is about saying enough
is enough, we have the power to
reverse this trend if we work
together.
4
connected Spring 2015
Based on over 3,500 responses
called for advice about benefits,
from families all across the UK, the
with almost two thirds (61%)
findings are particularly telling.
saying they were confused about
More than a quarter of families
the recent changes.
surveyed have extra costs relating
to their child’s disability of £300 or
more each month, with the biggest
government
cost being energy bills. When
fa mi lie s
Ensure
asked what would help
the benefits
Se ek
with the extra costs they
ad vic e on
and tax system
ene rgy
face, families called for
fin an ce s an d
adequately
co mpa nie s
be ne fit s from
discounts from energy
reflects the
Off er
Co nta ct
extra costs
companies (21%) and
disc oun ts to
a Fa mi ly
and
barriers
more support through
hou seh olds
to work families
the benefits system
with a
with disabled
disa bled
(24%). Some families
chil d
children face
news
Chantal on why
she came to
Parliament with
her sons to help
launch the campaign
“Harry has severe brain
damage, no immunity and
very complex epilepsy, which
means he can have between
2 and 12 seizures a day.
“Worrying about paying the
bills or paying off loans I’ve
taken out to pay for essentials
means I’m stressed and
anxious. I am constantly
robbing Peter to pay Paul.
“Going without essentials
like heating has a direct
impact on Harry. His immune
system is severely suppressed
so he needs extra heating. He is incontinent which
means he can get very cold
at night if he gets wet.
“Through autumn and
winter keeping Harry warm
with very little money
becomes increasingly difficult
but is vitally important. He can
catch flu very easily and this
has led to pneumonia in the
past – last year he had 13 lung
infections. As well as needing
extra heating Harry's bedding
has to be changed much more
than usual. It all adds up.”
Contact a Family, Children’s Trust Tadworth and parents show our support
Stop the DLA Takeaway supporters
gather at the Supreme court
Families showed their support for the Mathieson family who had a Supreme Court
hearing in March to challenge the Secretary of State for Work and Pensions about
the unfair removal of disability benefits from their son when he was in hospital.
If successful, this landmark case could stop hundreds of the UK’s most severely
disabled and sick children and their families being denied financial assistance at
a time when they need it most. So far 4,000 people have signed our petition!
Sign our Stop the DLA Takeaway petition at www.cafamily.org.uk/stopthedlatakeaway
Free guides
Finance
We have produced two new
guides – Money matters
and Help with fuel bills
– as part of our campaign.
For a free copy call our
freephone helpline on
Help with fuel bills
and keeping warm
0808 808 3555
Finance
Money matters
A checklist when your child has additional needs
Incorporating The Lady Hoare Trust
[email protected]
Incorporating The Lady Hoare Trust
Get involved!
Chantal, Edward, Harry and Rachel
Hill from Contact a Family
www.cafamily.org.uk
Contact your MP
One of the ways you can
help (if you haven’t
already!) is by contacting
your local MP and asking
them to support our
Counting the Costs
campaign. Sign up at
www.cafamily.org.uk/
countingthecosts
Help us reach
more families!
Our freephone
helpline can send you
a free poster to display
on your local community
centre or supermarket
notice board.
Call our freephone helpline on 0808 808 3555
Check your
benefits
Our expert parent
advisers can check
you’re getting everything
you’re entitled to, and
tell you how you could
be affected by benefit
changes.
[email protected]
connected Spring 2015
5
news
Stop bullying for all!
Angie Fenn reports back after two years running
our anti-bullying project
As regular readers of Connected will know, we have been delivering
workshops for parents around dealing with bullying in a two-year
project led by the Anti-bullying Alliance.
The project came to an end in March, and we’re pleased to report
our workshops have been a great success! 99% of parents said they
felt better informed about issues related to bullying, 93% are more
confident in dealing with bullying and 74% felt better able to deal with
stress related to bullying.
I also trained up our helpline so they could better support families.
So anyone who calls our helpline can get individual, detailed advice
about what to do if they’re concerned their
child is being bullied. We’re delighted to say
that the Department for Education will carry on
Dealing with bullying
funding our anti-bulllying work for another year.
Information for families – UK
For families with disabled children
For more information, tips and support if
you’re concerned your child is being bullied,
speak to one of our expert parent advisers and
ask for your free copy of our guide, Dealing with
bullying on freephone 0808 808 3555.
Tips parents shared for
building your child’s confidence
●●Emphasise your child’s strengths,
being specific where possible.
●●Help them to make friends, invite
other children into your home.
●●Talk about what a good friend is
– a good friend is kind, shares and
listens, not someone who hurts others
or makes them sad. Encourage your
child to be a good friend too.
●●Find out-of-school activities where
your child can develop their interests
and meet other like-minded children.
Let your child know
●●they are loved
●●it is OK to be different
●●they have the right to be happy
and safe
●●that no matter what happens,
you still care for them
●●that you believe what they tell you.
Incorporating The Lady Hoare Trust
Transport Matters!
Sheila Davies, our parent carer participation manager
for health, has been helping to write e-learning sessions
for the new Disability Matters website. She explains how
they can help parents and professionals alike.
Disability Matters is a new free
e-learning resource for the UK
workforce. It hopes to raise
awareness of the problems families
with disabled children commonly
experience, and help people
understand what they can do to
make their life easier.
The transport session begins
with a few video clips, where young
people talk about the problems they
experience, which varies depending
on the nature of their disability. In
one, Michael who has Tourette’s
syndrome gives a moving account of
6
connected Spring 2015
how he finds it difficult to get on a
bus when his tics are bad.
As well as public transport, there
is a section on ‘home to school
transport’. This includes what the legal
obligations are for local authorities, as
well as case studies illustrating some
common problems and what can be
done to avoid them.
There is also a section describing
schemes which support young
people to be able to travel
independently. Investing in these
schemes can result in savings to
home to school transport budgets.
They also help young people develop
a skill for life, which can lead to
greater social inclusion and improve
their employment prospects.
So why not have a look for
yourself? Perhaps you could contact
your local bus company, taxi service,
train station, home to school transport
service or disabled children’s team
and ask them to encourage their staff
to watch it.
Transport Matters is in the
Family and Society section at
www.disabilitymatters.org.uk.
news
BIG THANKS TO YOUNG FUNDRAISING STAR
Eight-year-old Oliver Bush (second
left), whose brother Adam has severe
disabilities, has donated a fee he
earned modelling for Sainsbury’s
to Contact a Family.
He earned the money when
he modelled for Sainsbury’s Active
Kids campaign. He was photographed
alongside paralympic swimming
champion Ellie Simmonds,
Liverpool footballer Daniel Sturridge
and paralympic sprinter Jonnie
Peacock.
Oliver said in a card which
enclosed his donation: “Thank you for
all the trips and outings you have
taken me and my family to. Please
find attached a donation to the
SCOTLAND
Getting it Right for Every Child
Getting it Right for Every Child (GIRFEC) is a national way of working for people
who work with children in Scotland. The aim is to bring together the right services
to assist children, young people and families. GIRFEC will be fully implemented by
2016 but many public authorities are working towards implementation already.
GIRFEC aims to ensure that people who work with children will check that
every child has what they need to have a good life by using the following eight
indicators to check that each child is:
●●Safe
●●Active
●●Healthy
●●Respected
●●Achieving
●●Responsible
●●Nurtured
●●Included.
GIRFEC also says that every child will have one person (a named person) who
looks out for them and their family if they need help. Some children who need
extra support may need a Child’s Plan and also have a Lead Professional. This
approach does not change how you should look after your child but it does
change how people who work with your child look after them.
If you would like more information about GIRFEC call Donna or Susan at
Contact a Family Scotland on 0131 659 2930
www.cafamily.org.uk
amazing and fun Contact a Family
to say a big thank you.”
Contact a Family Wandsworth
provides fun days, encouraging
families to get out and meet others
in a similar situation. This year’s
programme of events includes trips
to The Look Out Discovery Centre in
Bracknell, Legoland and Brighton.
SCOTLAND
Award
for our
volunteer
coordinator!
Our very own Volunteer Coordinator
Susan Brogan, will be presented with
the Investing in Volunteers award at
the Edinburgh City Chambers on 16
June. We are fortunate to have
wonderful volunteers in Scotland, and
worked hard to gain our award. The
award is the UK quality standard for
all organisations which involve
volunteers in their work.
Do you have a few hours to spare
each week? We are always looking for
enthusiastic and motivated volunteers.
If you would like to develop your
skills, meet new people and work as
part of a team call Susan on 0131
659 2931.
connected Spring 2015
7
news
Benefits news
Carer’s Allowance
campaign win
Derek Sinclair, senior welfare rights adviser, on our successful
campaign to increase the Carer’s Allowance earnings limit
Carer’s Allowance is the main benefit
for carers. The earnings limit prevents a
carer from receiving Carer’s Allowance
if their earnings, after certain
deductions, are more than a certain
amount. Contact a Family wrote to the
government to campaign for an
increase to the earnings limit at the
end of last year, and we are pleased to
confirm it has been increased to £110
per week from 6 April 2015.
This increase in the earnings limit
will mean that parents who are
working 16 hours on the national
minimum wage will be able to get
Carer’s Allowance. Previously, when
the earnings limit was £102, these
parents were likely to find that their
earnings were slightly too high to
qualify for Carer’s Allowance.
ow are your earnings calculated
H
for Carer’s Allowance?
Only your own earnings are counted. If you have a partner who works their
earnings are ignored. In calculating your earnings, the Carer’s Allowance Unit can
make certain deductions from your gross earnings. This includes not only any tax
and national insurance you pay but also deductions for:
●●any alternative care costs you have, for example if you are paying someone
to look after your child whilst you are working. There is a cap on the maximum
amount that can be deducted in this way – this is half of what would otherwise
be your earnings. There is no requirement that the childcarer is a registered
childcare provider. It can be still be deducted so long as you pay someone
other than a close relative
●●50% of any pension contributions that you make into a work or personal
pension scheme, and
●●an amount for any expenses you have that are ‘wholly, exclusively and
necessarily incurred’ in carrying out your work. For example if you have to
buy equipment or specialist clothing or have to pay for travel between
workplaces (travel between work and home does not count).
If your earnings vary they should be averaged out, although the period over which
they are averaged is at the discretion of the Carer’s Allowance Unit. If you are
self-employed your average earnings will normally be based on your most recent
year’s accounts, unless there has been a change in the pattern of your business.
hat other rules do I need to meet
W
in order to get Carer’s Allowance?
You need to be aged 16 or over and provide at least 35 hours a week care to
someone who gets either Disability Living Allowance care component at the
middle or highest rate, or the daily living component of Personal Independence
Payment, or Attendance Allowance. You must not be treated as a full time student
and you must also meet certain tests linked to your immigration status and length
of residence in the UK.
For more information call our freephone helpline on 0808 808 3555.
8
connected Spring 2015
New test for
self-employed
people
claiming
Working
Tax Credit
From April 2015, selfemployed people with
low earnings need to meet a
new test as part of claiming
Working Tax Credit. This
applies to anyone whose
earnings from selfemployment amount to a
figure that is less than the
average minimum wage x
24 hours (currently £156
per week).
If this applies to you,
then in order to be eligible
for Working Tax Credit you not
only need to meet the normal
rules but must also show the
Tax Credits Office that your
self-employment is
undertaken ‘on a commercial
basis and with a view to
making a profit’.
At the time of writing
HMRC has not provided any
guidance as to how it will
decide whether someone’s
self-employment meets this
new test. If you are a selfemployed parent and you are
refused Working Tax Credit
due to this new test call our
freephone helpline for further
advice.
These new rules only affect
whether someone qualifies for
Working Tax Credit, and
doesn’t affect eligibility for
Child Tax Credit.
Call our freephone helpline
for advice on money issues on
0808 808 3555.
news
Parent carer participation in England
Working together from the start
Forums work with local authorities and
health professionals to improve how
they support disabled children. This
spring Contact a Family, the National
Network of Parent Carer Forums and
our partners have run workshops on
co-production for parent carer forums,
local authorities and health partners.
The aim of our workshops is
to share the importance of true
partnership working and demonstrate
how parent carers and service
providers working together improves
planning and decision making in
local areas.
Attendees have the opportunity
to challenge their perceptions of
participation and to work to find
solutions to issues using coproduction.
The workshops have been
facilitated by local authority leads
and parent carer forums. The
What is co-production?
Co-production means service
providers working in partnership
with service users with a view to
getting what's on offer right ‒
right from the start.
By involving families in the
process from the beginning,
providers are able to set up or
make changes to existing
services to meet families’
needs, and make more efficient
use of resources.
Collaborating to plan, shape,
develop, implement or review a
service means all the right
people are around the table to
negotiate, taking into account
everyone’s perspective, as well
as meeting legal requirements.
PCP chairperson awarded MBE
We are delighted to
share the news that
Pat Bolton, chair of
the Gateshead
parent carer forum
who also founded an
ADHD support
group, has received
an MBE for services
Pat, (second from left) with Lynn, Claire and Carol
to families of
of Gateshead parent carer forum
disabled children.
Pat first got involved in disability services in 2002,
when her son was diagnosed with ADHD. Today Pat
is chairperson of Parents in Power, Gateshead's
parent carer forum, and is involved in the
Anti-bullying Alliance's national anti-bullying
project. Don't give up!
“I’m overwhelmed and honoured to be
There are people
put forward,” Pat said. “I’m keen to ensure
Carol Hope, Claire Parkinson, Lynn Smare
out there who can
and Gail Duxfield, the other members of
help and support
Parents in Power's steering group are
you.
recognised for their hard work, too.
Pat's
top tip
www.cafamily.org.uk
workshops have been so popular that
we are running a further session.
Watch our new film
Our new film on co-production
features Children and Families
Minister Edward Timpson MP and
parent carer forums talking about the
benefits of working in this way, and
the difference that co-production has
made to families and to their working
relationships.
You can watch the film on Youtube:
http://bit.ly/1GAGvVC
How to get involved
Almost all local areas in England
have a parent carer forum working
to improve children’s services. Read
more and find your local forum in
England at www.cafamily.org.uk/
parentcarerparticipation
Free online
parent carer
forum
handbook
Parent carer
forum handbo
ok
A how-to guide
for people setting
up or running a
parent carer forum
getting
started
teamwork
managing
finances
improving
services
charity
or social
enterprise?
managing
conflict
Contact a Family
working with
Our new, easy-tonavigate handbook for
forums explains the type of
knowledge and skills that parent
carers will need to run a
successful forum.
The handbook includes
information on all aspects of
running a forum, from getting
started, to governance and
finance and working with local
authorities and health to
improve services.
You can download our free
handbook for parent carer forums
at http://bit.ly/18xDC9Z
connected Spring 2015
9
news
A better
solution
Samiya and her husband Naveed Parvez set up
the first 3-D printed orthotics company, Andiamo.
Nathalie de Broglio went to find out more
What are ‘orthotics’?
Samiya Orthotics are appliances
such as specialist shoes, shoe
adaptations, or splints that support
or improve the movable parts of the
body. Orthotics help with mobility.
They reduce the need for surgery
and prevent or reduce the need for
a wheelchair. For every £1 spent
on orthotics the NHS saves £4
elsewhere.*
How did you and
Naveed come to
start your company?
Our son Diamo had cerebral palsy
and scoliosis and was quadriplegic.
We had to take him back and forth to
hospital for brace fittings.
Poor Diamo! He hated to be on
his back. I used to change his nappy
with him on all fours. Imagine having
to keep him still on his back for an
hour! It was very stressful.
You have to pin the child down
– make sure they don’t move whilst
the plaster is drying. And then wait at
least 13 weeks for something that’s
heavy and isn’t going to fit. Also, I
couldn’t buy him any clothes, or a seat,
or a wheelchair, or new shoes, even. I
had to wait for him to get his orthotic.
How long will it take? Will it fit?
10
connected Spring 2015
How did you come up
with the idea of 3-D
printed orthotics?
Caring for Diamo was extremely
difficult, because we had to fight the
system. The orthotics services were
where the majority of our fights were.
The way orthotics are done in hospitals
hasn’t evolved in over 100 years.
So myself and Naveed started
researching 3-D scanning and printed
orthotics and there wasn’t anybody
doing it. Tragically, on his ninth
birthday in 2013, when we had just
begun to explore the potential of new
technology, Diamo died.
He wasn’t sick, it just happened.
I went to his room singing happy
birthday and Diamo was drawing his
last breath. Naveed did CPR whilst
waiting for the ambulance but nothing
worked. We were told sometimes this
happens with kids with cerebral palsy.
You didn’t give up on
your plan?
Naveed The more people can use
their pain to make things better, the
better things are going to be. We can
do things better. A lot better.
We started our company Andiamo
in 2014. Our experience as parents of
a disabled child showed how critical
orthoses are to children’s development
and wellbeing. Without equipment,
children can have trouble feeding,
breathing, and engaging in education.
We aim to reduce the waiting time
for an orthoses from 13 weeks to just
48 hours. Shorter waiting times will
lead to significantly better outcomes
for the child. And these orthotics will
be cheaper than they cost the NHS
now. Also, you won’t have to go to
hospital. Somebody can come to your
home or school. 3-D scanning with
the camera takes just one minute,
and the result is 300 times more
accurate than the plaster cast.
For us, it’s not
how much profit we
make, but how much
pain is reduced
Last year, we raised £63,000
through crowdfunding for research
and development. Our aim is create
beautiful, high-quality orthotics by
using 3D scanning and printing
technology. Why should a teenager
have to go to school wearing
something uncool? Teens take the
news
old-style heavy braces off at school
and then their doctor wonders why
it isn’t working!
You have to make something
desirable, fashionable – something to
make a statement. Or make something
so thin that no one knows you’re
even wearing it. We want to get to the
stage where a family is able to say,
“Well, it is summer, I want a second
one, I want it to match my trainers.”
Now you never have a choice.
Unless it is hurting you and then you
have to wait for months.
2015 is the year – stop talking
and let’s just do it – Andiamo! At
every step we’re talking to the families
about what they need and want. They
give us feedback about what they like
and what they don’t like. We’ve just
made an Iron Man leg splint for
9-year-old boy. He loves it!
What are your plans
for the future?
For us, it’s not how much profit we
make, but how much pain is reduced
– a good service and a good product.
In five years, we want Andiamo to be
the top paediatric orthotics company
in the UK and we want to be top in
the world in ten years.
Find out more at andiamo.io
Call our freephone helpline on
0808 808 3555 for a free copy of our
Aids, adaptations and equipment guide
* Orthotic Service in the NHS, Improving
Service Provision (2009)
www.cafamily.org.uk
Could you change
the result of the
General Election?
There are millions of
disabled people and
their carers in the UK. If
we all registered to
vote, and did vote in
the general election, it
could decide the
outcome. Ministers
would have to start
taking issues for
disabled people and
their carers seriously.
If we look at the
cuts that have been
made during this coalition
government, we can’t fail to notice
that pensions and benefits for
another vulnerable group –
pensioners – have been protected,
while the harshest cuts have fallen
on benefits and services for ill and
disabled people and their carers.
This is no coincidence. Ministers
know that older people are more
politically engaged and more likely
to vote for them.
To this end, Operation Disabled
Vote (ODV), founded by disabled
campaigners, is working with the
Daily Mirror, Hope not Hate, Unite,
and Operation Black Vote in the
run up to the May 2015 General
Election.
As part of #NoVoteNoVoice,
the voter registration campaign is
aimed at tracking down some of
the 7.5 million unregistered voters
in the UK. Ellen Clifford of Inclusion
London, and a co-founder of
Operation Disabled Vote said,
“Disabled people remain one of
the most marginalised and
excluded groups in society and
everyday barriers to participation
include exercising our democratic
right to vote. As part of
#NoVoteNoVoice, we’re talking to
disabled people about how they
can vote and the access standards
they can expect at polling stations.
If disabled people want politicians
to prioritise the issues that matter
most to us then we need to make
disabled voter power really count.”
Helping to launch the
campaign, actress, comedian,
supporter of Operation Disabled
Vote, and Contact a Family Patron
Francesca Martinez said, “There
are millions of disabled voters in
the UK and they could easily
decide the next election. Operation
Disabled Vote is the first step on
that journey – getting people
registered and showing politicians
we will be at the ballot box.”
We urge all parent carers to do
the same – you can make a
difference!
To register online go to:
www.operationdisabledvoted.org.uk
For more information contact:
[email protected]
connected Spring 2015
11
news
Everyday people
Contact a Family's Pictures from Home photography exhibition
I
n January we held an exhibition
depicting the everyday life of
families with disabled children.
Working with award-winning
photographer Amanda Harman, we
spent a day in the life of Stevie’s
family in Manchester and Christiana’s
family in Lewisham. The collection is a
moving and heart-warming depiction
of family life.
The second part of the exhibition
had photos submitted by families
from all over the country and saw the
variety of life experienced by families
united by their children’s disabilities.
The exhibition came together to
represent the joys, challenges and
achievements that families experience
every day. The week saw a number of
events in the gallery, including a
private view for some of our
supporters, a drawing class and an
arts and crafts session for all the
families who submitted their photos.
Downing Street Breakfast
As part of our celebration of the everyday lives of families with disabled
children, Samantha Cameron invited two families to breakfast in Downing
Street. She chatted about family life with a disabled child and heard first
hand about the work we do to support families across the UK with lifechanging information and advice. Samantha Cameron said: "Contact a
Family's exhibition is a fantastic way to highlight the joys and challenges of
raising a disabled child. I am delighted to support such a positive initiative."
12
connected Spring 2015
Life is an
opportunity to
prove your strength...
I am not ashamed
of my story, my
imperfections make
me stronger
Charlotte, middle left
news
Left: Stevie, who has cerebral palsy and
Charcot Marie Tooth, loves playing with
her sister Billie: “they are our fantastic
girls” says mum Cath. Above and right:
Christiana, who has Down syndrome.
Mum Olu says, “As I watch her grow into
a young woman I feel very proud of my
wonderful daughter.” ©Amanda Harman
2014.
Stories from home
Clockwise from left: Alfie, whose “energy and enthusiasm for life
are inspirational”. You can read more about Alfie on page 21.
Charlotte, age 14 from Cornwall. She has a diagnosis of autism
and was hospitalised with depression. This is one of a series of
photos her mum took during her healing process. Hollie and
Scott have a rare genetic condition called Angelman syndrome.
Scott’s mum says, “Scott can have his moments... but his smile
can light up a room and his laughter is infectious. I never regret
having Scott – I have learnt so much from him.” Luke is 7 and
was diagnosed with autism just before his fourth birthday. Here
he has a quiet moment with his brother Jac. Luke needs a strict
routine so that he is able to cope with every day life. His mum
says, “However great the challenges, Luke is Luke and the love
we have for him outweighs everything.”
www.cafamily.org.uk
connected Spring 2015
13
rare conditions
We care
about rare!
This spring we turn the spotlight on rare conditions. Lucy Pratt, Contact a Family’s
Rare Conditions Information Officer, explains why we need to care about rare
Having a child with any additional need can be a
huge challenge in itself, but for those who have a
rare condition there are yet more challenges to
face. For example, it can often take a worryingly
long time to get a diagnosis, and initial
misdiagnoses may hinder any effective
treatment. After diagnosis, there is often a lack of
information about the condition, particularly for
extremely rare conditions – which makes
understanding the condition even more difficult.
Like all families, those with rare conditions,
their families and friends, are united by these
shared struggles. Their mutual experiences are
what make the rare condition community so
tight-knit, spirited, and strong-willed. We hope
you enjoy hearing about some of the wonderful
things that are happening – and I’m sure there
are many, many more stories out there.
A little history…
Contact a Family has a long-standing relationship
with the rare condition community. I’m sure
you’ve all seen our online medical information,
and some of you may remember (or may still
even have!) a copy of The Directory, the big red
‘encyclopaedia’ of rare conditions and support
groups. It all started in 1988 when Christine
Lavery, then our National Development Officer
and now CEO of the Society for
Mucopolysaccharide Diseases, came across a
book giving details of all German support
organisations for specific conditions. Each entry
had a clear, straightforward description of each
condition. Christine approached our then-CEO,
Harry Marsh, about the possibility of a UK
version. Funding for a medical researcher was
secured the following year, and the Contact a
Family Directory of Specific Conditions and Rare
Syndromes in Children with their Family Support
Networks was finally launched in 1991. Jumping
14
connected Spring 2015
forward to more recent times, the information is
now available online, and free to all! We also
changed the name to simply The Directory as,
let’s face it – the original name was a bit of a
mouthful!
Our website now holds information on over
400 conditions and specific support groups,
where possible. Each online entry is checked by
a medical expert in the field. See
www.cafamily.org.uk/medical-information.
Moreover, our database holds information on
thousands more rare conditions and support
groups – so if you can’t find what you’re looking
for on our website, give our helpline a call. We
may still be able to help!
Why all the sudden attention?
With the launch of the UK strategy for Rare
Diseases in 2013, and more recent events for
Rare Disease Day 2015, rare conditions have
been in the news lately – certainly more than in
previous years. You might be wondering what all
the fuss is about. If they’re so rare, why should
we care? If you look at the statistics on the next
page you’ll get some idea. Organisations like
EURORDIS and Rare Disease UK, together with
hundreds of condition-specific support groups,
have been working tirelessly behind the scenes
to raise the public profile of rare conditions. And
to debunk the myth that the word ‘rare’ means
‘unimportant’. We should all care about rare
conditions.
THANKS!
To everyone who kindly
shared their story with us
– it’s been inspiring to hear
about all the great things
going on in the vibrant rare
condition community.
rare conditions
e
ean Union c
rop
las
u
E
s
1 in
2,000
Th
rare conditions
as
o
n:
7,000
rare disease
with more being discovered all the time
t affects less
tha
th
a
ne
There are
approximately
a
es
ifi
1people
inwill17
be affected
Numbers of people living
with a rare condition
by a rare condition at
some point in their lives
3million
in the UK
30million
Rare conditions
in Europe
300million
Cancer AIDS
worldwide
Rare conditions impact more people
than AIDS and cancer combined
80%
of rare
95%
of rare
conditions are
genetic in origin
conditions
have no
effective
treatment
50%
of the people
affected by rare
conditions are
children
www.cafamily.org.uk
Breakthroughs in
treatments and
understanding
for common
conditions often
come from
research into
rare conditions
30%
of children with a
rare condition will not
see their fifth birthday
connected Spring 2015
15
rare conditions
Parents appreciate
having a safe place
to ask questions
You are not alone
Kay Henry explains how the Parent Carer Council for Cornwall’s
closed Facebook group helps them reach isolated parent carers
C
ornwall is a big rural county,
which is difficult and timeconsuming to get around. A
year ago our committee was
discussing how to reach more parent
carers and support groups, without
spending so much time travelling. We
had a Facebook page but decided to
set up a closed Facebook group to
help parent carers across Cornwall
raise issues with support and services,
with the forum.
I think Cornwall’s position in the
country often makes us feel isolated
and parents who don’t have a support
group nearby must feel this keenly.
The Facebook group has helped
parents to network with each other
and helped us reach some of the
most isolated parent carers including
those whose children have rare
conditions. We even had a couple of
parents who had been told that they
were the only parent in Cornwall of a
child with a certain rare condition,
16
connected Spring 2015
only to find out about others and
make contact via the group!
Facebook is a great way of getting
information out to a wide range of
parents countywide. Within a few
weeks we had over 100 members –
this is now 599 and growing. Parents
appreciate having a safe place to ask
questions, and those in support
groups can raise their members’
A parent carer forum is a group
of parents and carers of
disabled children who work
with local authorities, education
settings, health providers and
other providers to make sure
the services they plan and
deliver meet the needs of
disabled children and families.
In England there are parent
carer forums in almost all local
authority areas.
issues and report back on what the
forum has done on their behalf.
To ensure all parents of disabled
children can access the information
we do lots of face-to-face work too.
We regularly meet health visitors,
portage workers, midwives and
community health teams, put
information in hospitals and work
closely with our IASS (Information
Advice and Support Service).
However, there is no doubt the
closed Facebook group has helped
create an online community for
parent carers, reduced isolation and
given those who are isolated a voice.
As a forum we now feel confident
we are keeping up with the key issues
affecting families of disabled children
across the whole of Cornwall and are
working effectively on their behalf.
To find out more about parent carer
forums and how you can get involved
see www.nnpcf.org.uk
rare conditions
Life’s a
journey,
not a
destination
Ruby’s son Noah was diagnosed with a
number of complex rare blood conditions.
She shares her story with us
I
n 2009 – when Noah was one
– I realised that he had something
wrong with his blood. I just knew.
Since that moment, we embarked on
a journey that has been both heartbreaking and uplifting. It includes
moments of darkness; when I was
told how poorly he is, when he was
misdiagnosed, when I was accused of
abusing him, when he nearly died,
and such great moments of
happiness; when I see Noah laughing
as he plays football with his friends,
when I meet people who treat Noah
in the same way as they treat others,
when we partied at 10 Downing
Street!
Noah has five rare blood
conditions called Platelet Function
Disorders (PFDs). He also has
Thrombocytopenia. This means his
blood doesn’t clot normally and if he
knocks or bumps himself – which he
does regularly – it could mean that he
becomes seriously ill. Noah’s condition
is life-threatening but we live life with
PFD, not running scared of it.
Ruby and Noah on BBC Breakfast
www.cafamily.org.uk
As PFDs are really rare, there is very
little information about it. So I set-up
www.funnyblood.co.uk to help other
parents find information more easily. It
was also a way of doing something
We always try
to focus on the
good stuff!
positive when there were so many
negative things happening.
In fact, when I hear unhelpful
remarks about Funny Blood I wonder
what those people would do if they
had a child with such a serious and
rare medical condition? I guess I
COULD just sit back and wait for life
to happen? I CHOOSE not to. To
quote Harper Lee in To Kill a
Mockingbird: ‘You never really
understand a person until you
consider things from his point of view
. . . until you climb into his skin and
walk around in it.’
So, we get on with life and grab as
many opportunities as we can. In fact,
that reminds me of another quote,
this time from Ralph Waldo Emerson:
‘Life’s a Journey, Not a Destination’.
And this is OUR journey!”
For more information about
Funny Blood or PFDs, visit
www.funnyblood.co.uk. You can also
email Ruby at [email protected]
As well as providing
information, Funny Blood
raises awareness of PFDs and
fundraises for ongoing care at
the local Haemophilia Unit in
Birmingham Children’s
Hospital. Ruby has appeared
on BBC Breakfast TV, BBC
Midlands Today, BBC Radio
Hereford and Worcester and
guest blogs for BritMums.com.
She is also leading inspiring
initiatives with Acorns
Children’s Hospice, the West
Midlands Ambulance Service
and NHS Blood and
Transplant.
If that’s not enough, Ruby’s
a sole parent to Maya and
Noah and an Ambassador for
Contact a Family! Soon after
Noah was diagnosed, Ruby
found out about our work and
we suggested a number of
charities – including Family
Fund and Roald Dahl’s
Marvellous Children’s Charity
– who supported her, Maya
and Noah to live life with
PFDs. Ruby then started to
support us! She secured
funding for a care worker for
the West Midlands for us, and
became an Ambassador for us
in 2012. We think you’ll agree
that her story is truly inspiring.
connected Spring 2015
17
rare conditions
We just
wanted
to talk
to other
parents
When her son was diagnosed with Pitt Hopkins syndrome, mum Sue
knew no-one else in the world with the condition. Here she explains
how she set up the first ever Pitt Hopkins support group
C
hristopher was born in the UK,
but we’ve lived abroad for
many years because of Brian’s
(my husband) job – eventually we’re
hoping to return to the UK.
Christopher, now 23, is the second of
three boys and his brothers are
Andrew 27 and Nathan 18.
The main problem of not having a
diagnosis was not knowing the cause
of Christopher’s severe developmental
delays. We knew from the age of
three, after an MRI at Great Ormond
Street Hospital, that Christopher has
hypoplasia of the corpus callosum
(underdevelopment of the middle
structure of the brain). But this didn’t
explain all his difficulties, and we had
to wait until Christopher was nearly
16 to find he had a known genetic
syndrome.
Christopher is very delayed, we
were told he was between 9 and 15
months in development. Christopher
is non-verbal and is incontinent. He
walked at 9 years old and in February,
age 23 managed to stand up from
the floor without any help!
Of course, we didn’t know any
other parents with a child quite like
Christopher, but we had friends with
18
connected Spring 2015
other diagnosed children online. We
had read that 60% of children never
receive a diagnosis, so we just
imagined he was one of the ones
who would never have a diagnosis.
The search continues...
When we moved to Holland, we
thought we should get him known at
the local teaching hospital in case he
should develop seizures again. The
genetics department at the hospital
tested him for Angelman syndrome,
(Christopher’s fourth Angelman test!),
along with male Rett syndrome.
Following on from this, a few years
later they thought of him as a possible
candidate for the newly developed
Pitt Hopkins syndrome test.
Finally an answer
In October 2007, completely out of
the blue, we received the call from
our geneticist informing us that our
almost 16-year old finally had a
diagnosis: Pitt Hopkins syndrome.
We’d never heard of it before, and we
certainly didn’t know anything about it
– even the name was a mouthful! We
later found out that there were less
than 16 confirmed cases worldwide.
Our immediate thought was to look
for a support group, but there was
nothing available – so this is where
the story of the Pitt Hopkins
Syndrome support group starts!
We found a few research papers
but everything was in very clinical
language and sounded quite negative.
We really just wanted to talk to other
parents. We rang Contact a Family but
they had no more information than
the name, so they suggested we start
a support group – which is a good
idea if you know someone else with
the same condition, but unfortunately
we didn’t! It was so frustrating having
a diagnosis after so many years but
not knowing anyone else in the
same situation!
We had read
that 60% of children
never receive a
diagnosis, so we just
imagined he was one
of the 60%
rare conditions
Rare Disease Day reception
at the Houses of Parliament
It was my second time at the Rare Disease
Day reception in February. I was there with
another parent from Pitt Hopkins UK. We
heard a welcoming address from Elizabeth
Kendall MP and then from Earl Howe, Fiona
Marley and finally Alastair Kent. After a short
time to network, we were able to watch a
screening of the wonderful video for Rare
Disease Day from EURORDIS. A helpful
policeman took a photo of us to show we
really were there!
You can watch the video at
http://youtube/zQIeiQ7S6tQ.
First steps
Contact a Family suggested we put a
message on MakingContact.org and
Inspire in the US. Two days after we
posted on Inspire we heard from a
family in the US whose 16 month old
daughter was diagnosed just five days
earlier. We discussed starting an
online support group if we found
another family. We didn’t hear from
anyone else until the following March
when two mothers from the US
contacted us.
Start of something good!
All the families were keen to set up
an internet support group, so on April
13 2008, the Pitt Hopkins Syndrome
Google Group Support group was
created by the Pauca family from
North Carolina, and us, the Routledge
family from London (but living in the
Netherlands). That first week there
were four members. Now, almost
seven years later we have over 400
members and a Facebook group with
almost 350. We have families from all
over the world and the Pitt Hopkins
Research Foundation has been set up
in the US. I also helped Rob Pleticha
set up the Pitt Hopkins RareConnect
group (see page 25) and we were
one of three founding families of the
Dutch foundation. Charities have also
been set up in Italy and Sweden!
Our support group blooms
In the support group we feel like we
are one big family. Some people have
joined us when waiting for test results
and have been disappointed when
they don’t get a positive result.
Parents are always encouraged to stay
with us as long as they like, as there
are obviously shared experiences that
we still can help with.
Sometimes it’s hard to remember
what it was like when we didn’t have
a diagnosis, as so much has
happened since then. I try to
remember though, when new
members join the support groups. If
their child is very young and only a
few months behind their peers, it can
be hard for them to hear about
children that are much older. Some
parents come to the group with a
new diagnosis when their child is
maybe eight or nine, so they have a
much better idea of their child’s ability
and have come to terms gradually, as
much as you ever can, that your child
is going to be dependent for the rest
of their life.
We now have contact with about 50
families in the UK and together are
Pitt Hopkins UK. It is believed there
are 200 others diagnosed in the UK
and many undiagnosed. Some of us
first met in the summer of 2008, and
every summer since. In September
2011 we had our first Pitt Hopkins UK
Family day when Professor Raoul
Hennekam came to speak to us about
it, and last July we had another Pitt
Hopkins UK day when Professor Jill
Clayton-Smith came to speak, along
with Karen Robinson from Contact a
Family and Rob Pleticha from
RareConnect.
This year we are hoping to
become a charity. We really want to
find the other families in the UK with
a diagnosis and, of course, find those
who are still undiagnosed.
Families in the UK can get in contact
with Sue at http://pitthopkins.org.uk/ or
by emailing [email protected]
When parents realise that their baby is not developing as expected they want to know how to help, and why
their child is different. When a child has an ultra-rare condition it can be very hard to find a diagnosis, as there
may not be any available tests. This was the case with Pitt Hopkins syndrome (PTHS) until July 2007, when
researchers discovered the gene responsible and developed diagnostic tests. Since then a child is diagnosed
with PTHS if they are found to have a mutated or deleted TCF4 gene on chromosome 18q.
www.cafamily.org.uk
connected Spring 2015
19
uses a wheelchair
genetic condition
inclusion
additional
inclusion
special educational needs
child who has a disability
needs
learning disability
society
equality
dignity
non-disabled
health condition
respect
person
additio
need
long-term
disabled
disability
learning
ic
n
child who has autism
societ
resp
wheelch
enetic
dition
t
accessible
rare conditions
inc
What's in a name?
When it comes to disability, words count. Karin Beeler explains why
As I embarked on the call for stories
for this edition of Connected as editor,
it struck me that more than ever, the
thorny issue of language would rear
its head, with our theme of rare
conditions. Actually, it's not new and
will never grow old – 20 years ago we
were asking the same question –
what are the right words to use when
we talk about disability?
Disabled people and their carers
have tackled this issue head-on,
campaigning over the years to reclaim
a language of dignity for themselves.
Contact a Family supports and
upholds their views.
A social model of disability
The social model of disability evolved
from the disability movement and
represents a consensus, from disabled
people, about the way they prefer to
describe themselves. The social
model looks beyond a person’s
impairment. It looks at everything that
affects a person’s ability to participate
equally in society. For example,
people can be `disabled’ by heavy
doors and inaccessible transport.
The solution is to rid society of
barriers, rather than ‘curing’ people
who have impairments.
20
connected Spring 2015
The old ‘medical model’ of
disability sees people as only their
medical problems. Disabled people
have fought hard against the medical
model, which sees the disability as
the problem. In the medical model,
disabled people have to make the
best of an impairment and accept
that there are lots of things that
they can’t do.
Sticks and stones
may break my bones,
and words leave
emotional scars
that never heal
A young disabled person
And that goes against everything
we believe at Contact a Family,
working as we do with families to help
their child reach their full potential.
Mind your language
It's an issue we still struggle with
today. As you’ll see in this magazine
we're reporting on Rare Disease Day
2015, and the new World Birth
Defects Day.
‘But it's 2015!’ I hear you cry,
‘defect?!!’ I think about all the parents
and children I've worked with, friends,
family and colleagues. There's nothing
‘defective’ here, they are all so
beautiful, and I cannot bear to think
anyone might hear this word...
Contact a Family promotes
a social model of disability and a
positive image of disabled children
and their families. We recognise that
language is not an exact science and
that the words we use today will grow
old. And that not everyone agrees
with the current terminology. But it's
our best effort today that counts.
We’ve contacted the organisations
responsible to express our dismay
and encourage them to think of a
new name to call the day.
In the meantime, I urge everyone
to think carefully about the language
they use, and speak up when you
hear words you don't agree with.
Language constantly changes and
evolves. We have to be vigilant and
responsive to changes in the way we
talk about disability so we don’t get
stuck in the past and inadvertently use
insulting or discriminatory language.
gen
rare conditions
Looking for answers
uses a wheelchair
When Tracy Milne’s little boy Alfie became unwell it
took the family by surprise. A year later he was diagnosed
with an extremely rare condition
A
lfie was born on 10 June,
2007. He seemed like any
other child and then one day,
almost overnight, we noticed that
Alfie’s right leg was swollen.
Over the next year we attended
many GP and hospital visits, getting
x-rays and scans done and then
finally, a referral to Great Ormond
Street Hospital (GOSH) gave us a
diagnosis of Lymphangiomatosis
(benign tumours of the lymphatic
system which can grow anywhere in
the body and can cause severe
complications). At this time we
weren’t offered any support or
information.
As a mother you know your own
child, and over the next year I could
see that his health was deteriorating.
He was miserable and cried a lot. We
had more visits to various health
professionals, but nobody seemed to
be listening.
We had a review at GOSH just
after Alfie’s third birthday. On arrival
Alfie was admitted immediately with
internal bleeding and infection, and
was started on IV antibiotics. Over
the coming weeks he had several
clusion
blood transfusions but things weren’t
getting any better – Alfie was one
poorly child. My family travelled
down from Suffolk and my husband’s
mum travelled the 600 miles from
Aberdeen to London with our eldest
son. They were all shocked at what
they saw – Alfie was unrecognisable
from the little boy he had been
before.
Eventually, his condition stabilised
and he was started on a course of
chemotherapy to try to reduce the
size of the tumours. Five weeks after
our admission, Alfie was transferred
back to Aberdeen under the care of
the oncology department. This was
the first time since diagnosis that
Alfie’s condition had been taken
seriously. Chemo lasted for about a
year and then he was started on a
trial drug, which he has responded
to well. This is not a cure and can
only be used in the short term
because of the unknown long-term
side effects.
We can’t reverse the damage the
condition has already caused. He took
his first unaided steps at the age of
five, but as he gets older he relies
Rare Disease Day
Tracy reports back
Rare Disease Day is an annual
awareness-raising event for the
worldwide rare condition
community. It is held on the 29th
February, a rare day when it is a
leap year, and 28th February in
other years.
As a patient organisation we
always try to get involved to help raise awareness of Rare Disease Day.
At a Charity Ladies Night we all raised our hands for Rare Disease Day.
By marking this day we hope that more rare condition organisations
and individuals will come forward and join us in our campaign to
continue to draw attention to Rare Disease Day here in the UK.
www.cafamily.org.uk
We opened our
hearts and shared
our story with our
local community...
we’ve raised over
£150,000!
more and more on walking aids and
his wheelchair.
Living with the challenges of a rare
condition has been hard; lack of
information and support, constantly
having to be on top of appointments,
keeping notes, chasing up results and
sharing that information with different
disciplines that are involved in Alfie’s
care. But we opened our hearts and
shared our story with our local
community, and in September 2011
we set up Alfie’s Trust and began
fundraising. In May 2012, we became
a registered charity, and work with
existing bodies like the
Lymphangiomatosis and Gorham’s
Disease Alliance in the USA to help
fund patient support projects and
research. To date we have raised
over £150,000!
For more information, or to donate,
go to www.alfiemilne.org.uk.
connected Spring 2015
21
rare conditions
Linked by genetics...
strengthened by community...
empowered by knowledge...
We are the
22q-ommunity!
Pioneering mum Gillian Cassidy is lobbying
to set up the first clinic of its kind in the UK,
and the first 22q clinic in Northern Ireland.
M
As many families
do, I soon became
an expert on my
daughter’s condition
22
connected Spring 2015
y daughter Lucia was
diagnosed on 1 January
2013 with 22q11.2 Deletion
syndrome. Before her diagnosis, my
family and I had never heard of 22q
and assumed it must be a very rare
genetic condition because any doctor
I took Lucia to after her diagnosis had
never heard of it.
As many families do, I soon
became an expert in my daughter’s
condition and to my amazement I
have discovered that actually it is one
of the more common rare conditions,
(if not even more frequent given the
rate of undiagnosed people living
with the condition). This fact ignited
the coals of advocacy within me, and
as my knowledge of 22q grew so did
my passion for making the condition
known to anyone who was willing
to listen.
I soon discovered that given the
right support I could make an actual
change right here in Northern Ireland.
I have the support of 22q11 Ireland,
the Max Appeal! and the Northern
Ireland Rare Disease Partnership.
With their help and contacts, in
January 2015 I was able to submit a
proposal to the health minister Jim
Wells to lobby for a 22q clinic, under
the consultation document of the
Northern Ireland Rare Disease
Implementation Plan. I did this
alongside Tabib Dabir from Belfast
City Hospital genetic department, who
is playing an instrumental part in this
concept. A concept that we hope to
be able to replicate the length and
breadth of the UK and Ireland.
My mum Lorraine and I began to
get in contact with other people living
here in Northern Ireland who either
have 22q or have a child with 22q
after Lucia and I did an interview with
UTV Live. We discovered that they
also not only wanted, but needed to
find other local people with this same
condition with whom to relate and
understand the struggles and
accomplishments.
Here we are two years on. We
have a wonderful Facebook group
with over 1,000 likes, and following
on 22q11 Northern Ireland, we
Tweet on 22q11_NI. We have met
so many others locally who have 22q
and seen each other through some
very difficult periods. We’ve made
amazing friends.
Read about Gillian’s moving
account of getting a diagnosis
for Lucia on her website at
www.22q11northernireland.co.uk
where you can also find information
and research about the condition.
rare conditions
The best
care for
Lyla
After an emotional wait and several MRI
scans, Katie Yarwood’s daughter was diagnosed
with the very rare Moebius syndrome.
T
he best days of our lives were
when our children were born.
My husband James and I have
had heartache along the way, but our
family is now complete. I’m Katie, an
artist and small business owner, my
husband James is a civil engineer. We
have two amazing children, Josh who
is four and Lorelei, or Lyla as we like
to call her, who is two and a half. We
live in the idyllic town of Thornbury,
South Gloucestershire.
My daughter Lyla has Moebius
syndrome. This rare condition is so
unknown I had never heard of it
before my daughter’s diagnosis. Lyla
is a contented little girl, she loves to
explore and try new things, she is
chatty, funny and cute as a button
if I say so myself.
When Lyla was born we knew
something was different, she had
trouble feeding and her eye would
not close on its own. The left side of
her face was so swollen and no one
knew what was happening. She
weighed a healthy 7lbs 12oz and
everything was great apart from the
anomaly with her face.
From the start we had no answers.
We visited a paediatric doctor when
she was five weeks old. We were told
that the palsy was most likely some
unknown birth trauma and she would
regain movement by eight weeks of
age. The eight weeks came and went,
so we were told 12 weeks. By this
time it was apparent that there was
another cause, Lyla was now under
the care of a paediatric neurologist
We now know
the importance of
the ability to smile
and we scheduled tests to discover
the cause. The doctors prepared us
for the worst, the possibility of a brain
tumour or the fact she might have
suffered a stroke in utero.
The first MRI was scary and
upsetting; we all cried but were
relieved when the scans showed no
brain tumours or evidence of a stroke.
Again we waited, not knowing what
the cause was until in September
2014, an MRI revealed her cranial
nerves on the left side had not
Happiness depends more on the inward disposition
of mind than on outward circumstance
Benjamin Franklin
www.cafamily.org.uk
formed and thus Lyla was diagnosed
with Moebius Syndrome.
The syndrome has affected Lyla
by causing endless eye infections,
poor balance and facial pain. We still
have to make sure she chews her
food thoroughly before she swallows
and be very watchful that her eye
is protected from the elements
and dust.
Lyla’s nursery, Little Acorns in
Thornbury, has been excellent, helping
Lyla in regards to her balance and
have always been very watchful with
her palsy. Lyla’s keyworkers have kept
records for me of her progress and for
the doctors – they have even raised
charity donations for the Moebius
syndrome trust. Our families are
extremely supportive, as well as
James’ work enabling us to get the
best care for Lyla and providing
unbiased emotional support. Before
everything we have been through
with Lyla, we didn’t realise how
important facial movement was in
everyday life, we now know the
importance of the ability to smile.
We are trying our best to establish
a support network for Lyla when she’s
older by joining many support groups
online such as Courage to Smile, and
networking with other parents whose
children have this incredibly rare
syndrome. I’ve been moved to tears
speaking with the head of the
Moebius Syndrome Trust knowing we
are not alone and Lyla will have
support in the years to come.
connected Spring 2015
23
rare conditions
A
world-wide
of
webpossibilities
Louise Derbyshire, who looks after our
online family-linking service, explains how
it helps parents whose child has a rare condition
T
echnology is making our world
smaller, helping to break down
barriers and reduce isolation.
For parents whose children are
affected by rare disorders, reaching
out to others online is particularly
useful, as many will have been told
by doctors that there are only a small
number of cases in the world.
For many years Contact a Family
has been helping parents to reach out
to other parents locally, nationally and
globally through our online service,
MakinContact.org We launched this
service in 2004, as one of the many
ways we link parents.
24
connected Spring 2015
This service allows parents to
send each other private messages,
helping them gain knowledge and
information about their child’s
condition, and find out how other
families are getting on with their life,
dealing with challenges and
celebrating successes.
You may find that someone else’s
experience helps you to deal with
issues you too are experiencing. By
talking to others you may find out
about treatments, new therapies or
research projects that are being
conducted to learn more about the
condition your child is affected by.
Many rare conditions are known
by more than one name, and the site
will tell you if this is the case. This can
be useful in helping you find more
information about the condition.
I spoke to Anna, a mum who lives
in Wales, who joined MakingContact.
org in 2014 shortly after her daughter
was diagnosed. She wasn’t ready for
a support group but wanted to talk to
another mum whose child was close
in age to her daughter. She found
Angie, who didn’t live too far away.
They exchanged several emails and in
October 2014 they met up. For Anna,
MakingContact.org gave her the
rare conditions
opportunity to reach out to another
parent and she found it was a very
positive experience.
“At a point where I was feeling
overwhelmed and isolated, it was
simple and easy to make contact
with someone who understands
your feelings and is able to offer
support and advice.” MakingContact.
org is for everyone – not just those
with a rare disorder. There are a
surprising number of people
registered whose children have
conditions that are considered to be
more common – sign up today
and start making contact!
“One of the Mums I contacted
on MakingContact.org gave me some
useful information about specialist
milk for my daughter. I spoke to my
dietician who sorted it all out for me.
Happy days!”
“Just knowing that there are other
families out there who understand
was so comforting. MakingContact.org
was the first site I heard about and
used and I would definitely
recommend it to other families.”
Get in touch with parents like you at www.MakingContact.org
Rob Pleticha explains how families in the Rare
Connect Community can support each other
RareConnect.org provides patients and families with the opportunity to
discuss their rare condition experiences and learn from each other in a
safe, moderated environment, without disclosing personal details or sharing
data with third parties. RareConnect is an initiative of the European
Organisation for Rare Diseases, EURORDIS.
In 2014, parents Annie and Karl from the United States learned that
their son Jonah has a point mutation in the FOXP1 gene. Feeling very
isolated and with little to no information on their son’s condition available
online, they created the first FOXP1 online community through
RareConnect, a multilingual platform with dedicated support from
EURORDIS’ three community managers.
In only a few months, they brought together 13 families from around
the world to exchange experiences and information. Three of these families
do not speak English and benefit from the translation services offered
across five languages in the community.
“Creating this community and watching these families join has been so
incredibly rewarding”, says Annie. The FOXP1 community on RareConnect
resulted in the first ever known meeting of two people with this rare mutation.
RareConnect now hosts 70 rare condition communities and is
constantly growing. Members can look for guidance on wide-ranging topics,
such as finding a specialist, receiving a diagnosis, how to manage school, or
tips for parents on how to cope with their emotions.
One of the aims of the RareConnect community is to strengthen the
international network of patient associations and families. This ensures that any
advancements in understanding a condition, and progress towards effective
treatments is made. It makes sense that patient groups do all that they can to
collaborate on an international level, to pool together their expertise.
Visit RareConnect.org to learn more about the existing rare condition
communities or write to [email protected] to request a new community.
RareConnect is on Facebook and Twitter, search for RareConnect.
www.cafamily.org.uk
Tips for
staying safe
in online
communities
D
on’t over share
personal information on a
public forum. For example
your email address,
telephone number, the
school your child attends
or specific local services
you access. Find a way
to communicate that
information privately, only
to its intended recipient.
Use
a pseudonym
when discussing health
information online and be
aware of the data-sharing
policies of websites where
you share personal
information.
Consider
the source of
information and check
with your doctor before
making any treatment
changes. Even other
well-meaning parents
can give out treatment
information that could
prove harmful.
B
e careful when sharing
your child’s full name
online. Something they
might not mind at age ten
might be something they
are not comfortable being
available to the public at
age eighteen.
B
e careful sharing photos
of your child online too,
for the same reason!
connected Spring 2015
25
rare conditions
C
Finding
my feet
again
Being diagnosed with
a rare form of cancer
meant Nicole had to
quit school. Now she’s
looking forward to
the future
ancer is rare in children and
young people, accounting for
less than 1% of all cancers,
and is generally very different to those
seen in adults. Every year in the UK
around 3,800 children and young
people under 25 are diagnosed with
cancer. Around 2,230 are aged 15 to
24-years-old.
In early 2011, when she was
17, Nicole was diagnosed with Germ
Cell Teratoma of the ovary, a rare form
of ovarian cancer. It was a huge shock
to her and her family as she had been
wrongly diagnosed for two-and-a-half
years.
Nicole had three months of
intense chemotherapy and had to
give up school during her final year
when she was studying for her
Highers. During her recovery she had
support from Tracy, a CLIC Sargent
young adult community worker, who
helped her get back on her feet and
think about further education.
“It took me two years to get back
into college. I had a whole year of
recovery so for that whole time I
couldn’t really do anything. The year
after that I was finding my feet again
and that’s when Tracy really helped
me. She looked at different courses
with me and we talked about which
courses I could take to build my skill
set. She got me a place on a Prince’s
Trust scheme which I went on to
broaden my horizons and then we
talked about more college options.
I got accepted onto the health and
social care HNC, which I started in
September. I’ve really been enjoying
the course and I’ve been passing
everything with flying colours.
“It was a relief that I’d got through
it all. I had loads of support from my
family but because I had to quit school
I’m at a different stage in life to all my
friends and I felt like I’d been left
behind a bit. When you’re at school
you have that support network around
but I didn’t have that. If I hadn’t had
the support I had from Tracy and CLIC
Sargent I don’t know where I’d be.”
It was a relief that
I’d got through it all
CLIC Sargent is the UK’s leading
cancer charity for children and young
people and their families, and provides
emotional, practical, financial and
clinical support to help them cope with
cancer and get the most out of life.
Their report Coping with Cancer –
supporting young people’s resilience,
illustrates research that shows how to
build up resilience in young people,
and how access to the right information
and support can help young people to
confidently manage their illness.
Download Coping with cancer at
www.clicsargent.org.uk/copingwithcancer
Northern Ireland
Leading the way on rare conditions
Contact a Family is a member of
the Northern Ireland Rare Disease
Partnership and attended an event
in March for Rare Disease Day and
the first World Birth Defects Day.
World Birth Defects Day was
established by leading global health
organisations to raise awareness of
birth defects and expand care services
for people who are born with a rare
disability or health condition.
26
connected Spring 2015
The event was an opportunity to
share expertise and experiences, and
to look at the way forward for better
care and outcomes. Dr Frank Casey,
for example, spoke of how medical
advances have improved care of
babies being diagnosed with one
form of congenital heart disease
from a 90% death rate to a 98%
survival rate!
Frances Murphy, Manager of our
Northern Ireland Office said: “Hearing
from parents and people living with
rare conditions, and the work being
done by health professionals and
colleagues in the voluntary sector
was really inspiring.”
Our Northern Ireland office
supports parents and professionals.
Get in touch at nireland.office@
cafamily.org.uk or call 028 9262 7552
rare conditions
Children
with rare
conditions
to design
the perfect
nurse
On Rare Disease Day, 28
February 2015, Roald Dahl’s
Marvellous Children’s Charity
announced the creation of a
Roald Dahl Nurse for children
with rare conditions.
This will be the 51st Roald Dahl
Nurse post created by the
charity, but it is the first Roald
Dahl Nurse to focus exclusively
on rare conditions in children,
and the first one based at
Birmingham Children’s Hospital.
The new Roald Dahl Rare
Diseases Clinical Specialist Nurse
will improve the long-term
wellbeing of children and young
people living with serious rare
illnesses, and will work flexibly
across the broad spectrum of
rare conditions, with a particular
focus on those conditions that
are not priorities for the NHS.
The post will be unique
because children and young
people with rare conditions and
their families will be given the
opportunity to help to design
the post.
The nurse will also provide
children and families with
psychological support, as well
as providing support through
the important transition from
paediatric to adult care.
For more information about
Roald Dahl’s Marvellous Children’s
Charity visit www.roalddahlcharity.
org. You can tweet them
@RoaldDahlFund
www.cafamily.org.uk
The future’s bright!
A spokesperson at Great Ormond Street Hospital in London tells
us about plans for a new research centre for rare conditions
The Centre for Research into Rare
Disease in Children is due to open
in 2018. It will be a world-leading
centre of excellence that will tackle
some of the most challenging
scientific questions, enabling our
scientists and clinicians to more
accurately diagnose, treat and cure
children and young people with
rare conditions.
Bobby Gaspar, GOSH consultant
and Director of the Centre for
Research into Rare Disease in
Children, says: “It’s not just about
finding new cures and treatments for
patients with rare diseases at GOSH;
it’s about finding new cures and
treatments that can be applied to
children with rare diseases across
the world.”
The findings from the research
teams at the centre will also have
the potential to feed into treatments
for more common childhood
conditions.
Great Ormond Street Hospital
(GOSH) has the UK’s widest range
of health services for children on one
site and is the country’s only academic
Biomedical Research Centre specialising
in paediatrics. Visit www.gosh.nhs.uk
More screening for babies
Newborn bloodspot screening is done to identify babies who have
rare but serious conditions. Babies are currently screened for:
●●sickle cell disease (SCD)
●●cystic fibrosis (CF)
●●congenital hypothyroidism (CHT)
●●phenylketonuria (PKU)
●●medium-chain acyl-CoA dehydrogenase deficiency (MCADD).
Since early 2015, based on a one-year project involving over 400,000
babies, newborn blood spot screening in England is being rolled out
to include four additional rare conditions:
●●maple syrup urine disease (MSUD)
●●homocystinuria (pyridoxine unresponsive) (HCU)
●●isovaleric acidaemia (IVA)
●●glutaric aciduria type 1 (GA1)
Testing newborn babies for rare conditions means that life-saving
treatments and therapies can begin as soon as possible, and helps
prevent affected babies from dying or being severely disabled. For
example, people with MSUD cannot process dietary proteins properly,
and proteins in the diet can cause neurological (brain) damage. If
MSUD is identified early, babies can be put on a special, low-protein
diet to help stop this from happening.
To find out more about the expanded screening programme, please visit
newbornbloodspot.screening.nhs.uk/expandedscreening
connected Spring 2015
27
rare conditions
Top tips and resources
If your child has a rare condition or is waiting for a diagnosis,
you may find the number of professionals you see and
appointments you have to attend overwhelming. Our guide
to Living with a rare condition has tips from parents who
have ‘been there’ – here are a few:
Living with a rare condition
Information for families
Incorporating The Lady Hoare Trust
eep a paper trail. Keep copies of all letters, appointments, and test results
K
in a folder. Keep a note of all the phone calls you make as well.
If you find reliable information about your child’s rare condition, take a copy to
appointments with people who may not be familiar with it, such as your GP,
social worker or physiotherapist.
If you feel you need to see a specialist, or if you think you may have got ‘lost
in the system’, don’t be afraid to phone and find out. Ask to speak to the
doctor’s secretary to find out what is happening with your child’s appointment.
on’t be afraid to ask your specialist questions that are concerning you,
D
however silly or insignificant you think they may seem.
If your child is waiting for a diagnosis you may also find our guide Living without
a diagnosis helpful. And our A-Z medical directory has
information on more than 400 conditions, with their support
groups. If your child has a rare condition and one of the
features is, for example epilepsy, it may also be helpful to
contact the support group for epilepsy to help you manage
that feature of their condition.
Living without a
Information for families
diagnosis
Incorporating The
Lady Hoare Trust
UK
Getting
involved
in research
Some families may consider
becoming involved in research
or clinical trials for treatments
for rare conditions. The decision
to take part will be individual
for each family. Always try to
find out as much unbiased
information as possible before
deciding to take part and make
sure you inform your child’s
specialist about what you
have found. Condition support
groups may also have useful
information on research
and trials.
www.nhs.uk has information
on clinical trials and questions to
ask before getting involved.
www.healthtalk.org has
interviews with parents talking
about how they found out about
trials and why they decided to
take part.
For a free copy call our freephone helpline on 0808 808 3555
[email protected]
Special needs and legal entitlement
As parents of disabled and special needs children, our
day-to-day lives are filled with complications, which are
unimaginable for some.
The recent changes set out by government and the
speed at which they have been implemented, along with
the sheer mention and thought of the new Children and
Families Act 2014, the Code of Practice, Care Act 2014
and many others, fills us with a sense of dread and anxiety.
Seminars are being run all over the country with
conflicting levels of understanding of just what all these
changes mean, for us and those we care for.
One big question arises – who do we turn to for
credible and affordable advice? Special needs and legal
entitlement by Nettleton and Friel, provides such advice.
While some would say this book is not for the faint
hearted because of its reference to sources of legal
information, it lays out in a clear and understandable
format the changes which have been thrust upon us, by
28
connected Spring 2015
breaking down and scrutinising them.
Precise references are clearly identified.
The case studies, guidance notes
and list of common problems brings
the whole matter of the SEND reforms,
Children and Families Act 2014 and
legal issues into clear perspective.
This book is a must-have for all parents of children
with additional needs. It allows us all to be better
informed in real terms. It helps us ensure we all achieve
the best for our children. And, ironically, assists those who
are responsible for implementing the system.
Review by Chantal Chaervey (mum)
Special needs and legal entitlement - the essential guide to
getting out of the maze, by Melinda Nettleton and John Friel,
Jessica Kingsley Publishers
legal view
The Care Act 2014
Caroline Barrett, Solicitor in the Public Law Department at
Irwin Mitchell Solicitors, comments on the new law in England
O
n 1 April 2015, the majority
of the Care Act 2014 will
come into force. It will
consolidate and reform the existing
laws that relate to adult social care. In this article we will look at what the
new Act will mean for parent carers.
Parent carer’s assessments
The Care Act mainly applies to
adult carers of adults. Parents of
disabled children are still entitled to
an assessment under the Children
and Families Act 2014. This must
be carried out on the appearance
of need, or where an assessment
is requested.
The assessment will need to
consider the carer’s wellbeing, and
whether the carer is willing to
continue providing care to the child.
However the provisions and guidance
relating to these assessments are not
as extensive as those under the Care
Act. Furthermore, local authorities can
provide services to meet the needs
that are identified, but there is no
duty to do so.
Child’s carer’s assessments
The Care Act 2014 contains some
important provisions about what
happens on transition, before a child
reaches the age of 18.
A ‘child’s needs assessment’ must
be carried out for a child where it
www.cafamily.org.uk
would be of significant benefit to the
child and where it is likely that they
will have eligible needs for care and
support when they reach the age of
18. A ‘child’s carer’s assessment’ must
also be carried out for the parent
carer. The assessments must identify
what support the child and the carer
might require when the child reaches
the age of 18.
The statutory guidance suggests
that these assessments should take
place when it is easier to understand
what the needs of the child and carer
will be beyond the age of 18. For
children with Education, Health and
Care plans, it is likely that they will
take place during the transition
process, from Year 9 onwards.
Importantly, the Care Act gives
the local authority the power to meet
a carer’s needs under the Care Act
even before the child reaches the age
of 18. This provides stronger legal
rights to parent carers during this
transition period.
Carer’s assessments
The Care Act provides much greater
rights for carers. For the first time, the
needs of a disabled adult’s carer will be
treated in the same way as the needs
of the disabled adult themselves.
In addition, the Care Act places
local authorities under an important
new duty to promote the ‘wellbeing’
of individuals, including carers, when
making any decisions under the Act.
All carers will be able to request
a carer’s assessment where they
‘appear’ to have needs for support.
This is a low threshold and will entitle
most carers to an assessment. The
assessment must be person-centred.
It must take into account the carer’s
wellbeing, the outcomes they would
like to achieve, whether the carer is
able and willing to provide care and
support to the disabled adult, and
whether the carer would like to access
work, education or training.
The local authority will be under
a duty to meet all the carer’s eligible
needs. A carer’s needs are ‘eligible’ if
the carer is not able to meet one or
more of the outcomes set out in new
eligibility criteria, and this is having a
significant impact upon their
wellbeing. These outcomes include
maintaining nutrition, developing
family relationships, and engaging in
recreational facilities.
A financial assessment will also be
carried out to see if the carer needs to
contribute towards the costs of the
support they receive.
Further information on the Care Act,
including factsheets and precedent
letters, can be found at
www.irwinmitchell.com/the-care-act
connected Spring 2015
29
network news
Local Groups Network
Groups that have recently joined our network
Manchester
Stockport CP Society
Services such as after-school and
holiday clubs, youth clubs, and
weekend activity breaks.
[email protected]
M9 ADHD Parent Support
Group
For families that live with ADHD in
North Manchester. Meets fortnightly at
Victoria Avenue Library and Learning
Centre. http://m9adhdpsg.btck.co.uk
South Manchester Down
Syndrome Support Group
Social events and training for parents
and education professionals to
support children's learning with
speech and language therapy, sing
and sign, yoga, and drop-ins, once a
month on a Friday.
[email protected]
ADHD and Life
Wythenshawe
For parent carers of children and
young people with ADHD and
associated conditions in the
Wythenshawe area. Holds a coffee
morning every Tuesday to provide
information, advice and support in
a friendly relaxed environment.
07428136339
[email protected]
Grange Parent/Carer
Support Group
Weekly group open to parent carers of
children with autism within the school
community of Levenshulme.
[email protected]
0161 2312 590
The Autumn Group
For parent carers of children and
young people with additional needs
– including undiagnosed. Meets
weekly. www.theautumngroup.co.uk
[email protected]
30
connected Spring 2015
Oxfordshire
Oxfordshire Deaf
Children’s Society
Support and social events for deaf
children, young people, young adults
and their families.
www.oxfordshire-deaf-childrenssociety.org.uk
Essex
All Ability Sports and
Leisure
Sports and leisure activities for people
with a disability aged eight years and
above. Activities include Boccia,
swimming and much more!
[email protected]
ADHD and Support
Support group that meets at
7pm. Services include talks to local
groups and schools, and family
support services.
Call Steve on 07866 129 728
Suffolk
Little Stars Parent
Support Group
Guided play opportunities for children
and a friendly place for parents and
carers to meet up. This is a referral
service only.
Call Karen on 01206 299 467
School For Parents
Coffee and Chat (Ipswich)
For parents and children aged 0–5
with a physical disability. Meet weekly
during term time in a converted barn
with specialist equipment, a sensory
corner and physiotherapy equipment.
[email protected]
Gloucestershire
South Cotswolds Parent
Carers Support Group
Support group for parents and carers
of children and young people with
additional needs. Meets every two
months in Fairford.
01285 712 161
[email protected]
Dorset
Downright Perfect
Aimed mainly at children 0–5, the
group welcomes older children too.
Meets twice a month, 12.30 to
2.30pm, 12.30 to 2.30pm.
07513 148 082
[email protected]
The Umbrella Group
Saturday club for toddlers to young
adults on the fourth Saturday of the
month from 10am to 12pm in
Christchurch.
07900 693 131
[email protected]
South
Find out more about
our local groups
network by emailing
our local groups officer
adele.meader@
cafamily.org.uk
Autism Wessex
Specialist services for people affected
by autism and associated difficulties
across Dorset, Somerset, Hampshire
and Wiltshire. Services include
Portfield School for education,
residential and respite care and
support groups. www.autismwessex.org.uk
[email protected]
network news
Tyne and Wear
FLASH Autism
Group for parent carers, children with
additional needs and siblings that
meets monthly.
www.Flashautism.co.uk
[email protected]
Barnard Castle Parent
Support Group (Co
Durham)
For parent carers of children and
young people with any additional
need, meet monthly at Barnard Castle
One Point Hub.
03000 26 11 20
Derbyshire
Boost
For parent carers living in Chesterfield
and North Derbyshire for ADHD/ASC
and any condition that causes
challenging behaviour. Ages 0 to 28.
Meets at Stavely Community Fire
Station, Chesterfield on the first Friday
of the month during school term
time, 10am to 11.30am.
[email protected]
Everybody Hurts
For parent of any age or disability
affected by child abuse. Meets once a
month at Staveley Community Fire
Station in Chesterfield.
www.everybodyhurts-derbyshire.org
ASC/ADHD Parent/Carer
support group
Monthly meetings at St Thomas's
Centre, Brampton from 9.30am for
peer support, refreshments and
occasional speakers.
[email protected] 01246 569 142
Yorkshire
HUHA!
For carers of children with additional
needs. Meet for coffee in the family
room at New Earswick Children's
Centre on the last Thursday of the
month.
[email protected]
Leeds Afasic
Facebook page for support, advice,
social and information events.
[email protected]
www.facebook.com/groups/
LeedsAfasic
Bluebell Wood Children's
Hospice Parent and
Grandparent Group
Activities, reiki and time to 'be' at a
group for bereaved parents and
grandparents whose children have a
shortened life expectancy.
www.bluebellwood.org
Norfolk
Slice of Advice
Weekly group from Slice of Heaven
teashop. Guest speakers, sensory
toys, cupcake making and a play area.
Early Bird courses run by a trained
educational psychology therapist.
[email protected]
www.facebook.com/
sliceofheaven1970
Scotland
Autism and ADHD Support
Group Skye
Fortnightly support group for
parents with a child with autism/
ADHD. Meets at the Portree
Community Centre
01470 542 432
[email protected]
Free help and advice
for support groups
Whether you’re setting up a local group, a social enterprise or a rare condition charity, Contact
a Family’s free Group Action Pack guides are packed with tips and sources of specialist advice.
The guides cover issues ranging from starting a group and holding meetings, to publicity,
charity registration and fundraising. And with15 guides to choose from, you’ll find lots of
ideas to develop your group.
Download your free Group Action Pack guides at www.cafamily.org.uk/groupactionpack
www.cafamily.org.uk
connected Spring 2015
31
Need advice?
People take their time
to support me. I always
come back to the
helpline for advice.
Call our freephone helpline, a ‘one-stop-shop’
for advice and information on any aspect of
caring for a disabled child.
0808 808 3555
[email protected]
Open Monday to Friday, 9.30am–5pm
Our education advisers can help you with
●●early years
and preschool
●●getting extra
help in school
●●statements and
EHC plans
●●bullying
●●exclusion
●●transport
●●support for
medical needs
●●education after 16.
Our general advisers can help you with
●●benefits or tax credits issues
●●details of local and national parent support groups
●●information about your child’s condition
●●how to access help with getting a break from caring
●●details of grant-giving charities
●●any other aspect of caring for a disabled child.
Running the Marathon for
Contact a Family is my way
of thanking them for
supporting Shola and me.
Help us support more families – you
can fundraise by doing almost anything!
Call us today on 020 7608 8786
or email [email protected]
020 7608 8700
[email protected]
www.cafamily.org.uk
www.facebook.com/contactafamily
www.twitter.com/contactafamily
www.youtube.com/cafamily
Autumn winter 2014
connected
For families with disabled children and all those who work with them
connected is kindly supported by
Legal experts in challenging health and
social care packages, special educational
needs, Court of Protection issues, wills and
trusts, as well as serious injury and medical
negligence claims. Follow us on Twitter
@irwinmitchell www.irwinmitchell.com
Rub it out!
Stop Bullying for All – Anti-Bullying week,
pArentS ShAre their experienceS
Update from oUr new
Ceo, amanda Batten
“I’m looking forward to
working with you all.”
Connected Aut Wint 2014 16 Oct JC.indd 1
news from the nations
Books
Disability Pride in Northern
Ireland, outreach in Scotland,
and policy news from Wales
Parents’ reviews – PLUS a
chance to win a book by
Sir Quentin Blake!
16/10/2014 10:39