Background information
Health services
Background information
Health services
About this publication
Early Support in Wales is the Welsh Assembly Government’s mechanism for
achieving better co-ordinated, family-focused services for young disabled children
and their families across Wales.
This Background information booklet was developed in partnership with parents,
carers and those who work with families. It is based on the Background
information booklet: Health Services, adapted by kind permission of Early
Support, a UK government initiative in England that was funded by the
Department for Children Schools and Families. This version of the publication
was adjusted for the Welsh context by the Early Support Wales implementation
team.
The booklet is the one of a series. The other titles that are available are:
Introduction
Education
Statutory Assessment - Education
People you may meet
Financial help
Social services
Childcare
Useful contacts and organisations
To find out more about Early Support in Wales, to obtain copies of other Early
Support materials and to explore associated training opportunities, visit
www.earlysupportwales.org.uk
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Background information
Health services
Introduction
All parents start out knowing something about health services. Nearly everyone
has a family doctor (GP) and has visited their local hospital at some time. You
may have been in hospital for an operation yourself, or attended hospital or a
health centre for an outpatient appointment.
You may already know what health visitors do. They are nurses or midwives who
have additional training to work with babies and young children and their
families. They might run clinics from your doctor’s surgery or at your local
health centre or Integrated Children’s Centre.
The health service provides services that everyone in the population can access
(universal services) and other services that you are more likely to come across
because your child needs extra help and support. These services are usually
called specialist services.
This section provides an introduction to specialist health services. Some of the
services described are provided in hospitals, clinics or child development centres
and you may have to attend appointments at a distance to access them.
Community health services are provided in your local area, sometimes by people
who visit families at home.
Paediatric services are services for children. A doctor or consultant who
specialises in working with children is called a paediatrician.
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Background information
Health services
Hospital and the very early support
of babies
Leaving hospital can be daunting if your baby has received a lot of specialist
treatment and it’s important that you feel confident about taking your baby home.
If your child has spent a few days or weeks in a Special Care Baby Unit, you may
be introduced to a health visitor or someone from the Community Children’s
Nursing Team in your area before you leave.
Sometimes babies are referred on to other more specialist hospitals or clinics
soon after birth because they require specialist treatment and support. These
centres are sometimes called tertiary centres.
Before you are sent home, it’s usual for tertiary centres or the paediatrician
from the Special Care Baby Unit or one of their team to arrange a hospital
discharge meeting.
A hospital discharge meeting is a meeting held after a child has spent a period
of time in hospital. All the professionals who have been involved with you and
your baby will be invited to the meeting - for example, doctors, hospital nurses,
community children’s nurses, health visitors and others. People who work in your
local health service may also be invited. The aim of the meeting is to plan with
you the kind of support your family will need at home.
For example, if your child needs intravenous medication, is dependent on
oxygen, or needs regular suctioning, it could be arranged for you to receive a
visit at home from a professional for a few days or weeks to help you undertake
some of these tasks and teach you how to manage them.
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Background information
Health services
Support after you and your baby go home
Routine support
When birth has been straightforward, mothers and babies go home after a few
hours or an overnight stay and are visited by a midwife and then a health visitor.
Most families with young children then expect to make an occasional visit to their
family doctor, a general practitioner (GP).
A number of routine screens are carried out on newborn babies. Among other
things, your health visitor will check that any concerns raised by these screening
procedures have been properly followed up and investigated.
Depending on your child’s development, you may have only routine contact with
health professionals from this point until a specific developmental check raises a
question mark about your child’s physical condition or development, or you raise
concerns about your child’s development or behaviour with your health visitor,
childminder or nursery.
Specialist support
When birth has not been straightforward and a baby has had a short stay in
hospital, they are usually visited at home by a midwife. The midwife can visit for
as long and as often as is necessary. Some mothers need lots of visits, others are
fine with once or twice a week. The midwife or health visitor can provide support
for you in many areas, including helping you in feeding your baby.
Between 10 and 14 days after birth, your family health visitor will make a routine
new birth visit to offer support and information. They will explain their role to
you, talk to you about immunisations, examine your baby and complete your
personal child health record, which should already have been given to you. In
lots of places, the personal child health record is known by its colour - for
example, ‘the red book’.
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Background information
Health services
Hospitals operate different systems. You may have met your health visitor in the
ante-natal period or before your baby is discharged home. Sometimes your
health visitor will refer you to a specialist colleague once you have arrived home.
A specialist health visitor can act as a bridge between the hospital and
community health services and offer support to you and your family until the time
your child starts school.
An introduction to a health visitor at this stage can mean several things. Health
visiting is a universal service and all families will meet with a health visitor at
some point – it does not mean that there are any concerns about your child.
However, it could already be clear that your child has a particular condition and
needs extra help - they may have Down syndrome, for example. Or it could be
that the hospital paediatrician is concerned that your child’s development may be
different to that of other children because your child was premature or had lots
of medical complications at birth.
If your child spent any length of time in hospital and was transferred to a tertiary
centre, it’s likely that you will be offered follow up appointments with each
hospital paediatrician who looked after your child. This could amount to three or
four different appointments with doctors (some of whom will be specialists) in
different hospitals.
Clinic appointments will be in either a hospital setting or a local health centre.
Sometimes they are in a specialist centre like a child development centre. It depends
on how services are organised in your area. Appointments are arranged every six
months or more often, depending on your child’s health and development.
If you are in this situation, look at the Early Support Family file, as it can be
useful when you prepare for these visits, and try to tie together the information
you are receiving about your child. You can find out how to get hold of a copy
at the back of this booklet.
You might also be given ‘My Orange Book’. My Orange Book is offered to
families who have a child with additional or complex needs. It is a written record
of information for a child and their family and it is intended to go everywhere
with the child. It is a personal record that has as much information as possible
about the child. My Orange book has a similar purpose to the Early Support
Family File in that it can enable you to avoid having to tell your story over and
over again and provides a single place to keep everything together – it should
help to make life easier. Ask your health visitor for more information about this.
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Background information
Health services
Developmental screening: picking up
issues that develop as time goes by
All children have some routine health reviews carried out by a health visitor or
GP. Parents are also encouraged to use the personal child health record (the
‘red book’). This is usually given to you when your child is born. It’s intended
to help you monitor your child’s development and if you have concerns, to
discuss them with your GP or health visitor.
You can probably expect the following health reviews, but children at high risk of
certain conditions, may receive more frequent reviews.
After the birth
Maternity services will support you with breastfeeding, caring for your new baby
and adjusting to life as a parent. Your baby will be examined and given a
number of tests, including a hearing test.
By 14 days
A health visitor, will carry out a new baby review. They’ll advise you on feeding
your baby, becoming a parent and how to help your baby grow up healthily. Your
baby should be weighed (naked) at birth, at around 3 days and at 10 days old.
Between six and eight weeks
Your baby will have a full physical examination by a health professional.
At eight weeks, three months and four months
Your baby will be given their scheduled immunisations. This is also an
opportunity for you to raise any concerns you may have and to ask for any
information you need. If you have any worries at any other times, would like to
know more about your own or your baby’s health or have your baby weighed,
contact the team or go to a local child health clinic.
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Background information
Health services
By one year
Your child will have a second full review, checking on areas including language
and learning, safety, diet and behaviour. This is an opportunity for you to discuss
any concerns you may have and to prepare for your child becoming a toddler.
Your child will be given another immunisation and you will have the opportunity
to discuss their progress or ask for information.
At 13 months
Your child will be given the MMR immunisation and you will have the opportunity
to discuss their progress or ask for information.
Between two and two-and-a-half years
Your child will have a third full health and development review. Again, this is a
chance for you to ask questions and get ready for the next stage of your child’s
development. A health visitor, nursery nurse or children’s nurse will usually carry
out this review. They’ll encourage you to talk about how things are going and
will listen to your concerns. The review might be at your local Integrated
Children’s Centre, GP surgery or at home. The review will ensure that health and
development needs are being addressed.
If there is concern about any aspect of your child’s development as routine
developmental checks are made, you may be referred to a Child Development
Centre or Child Development Team for a more detailed assessment.
If your family, your health visitor or your GP have concerns about your child’s
social development and communication, they may use a screening instrument
called CHAT. CHAT is an abbreviation for the Checklist for Autism in Toddlers. It’s
a short questionnaire that is completed by you with your health visitor or GP. It
has two sections - the first nine items are questions for you to answer and the
last five are observations made by the health visitor or GP.
If the behaviours that CHAT concentrates on are absent when your child is 18
months old, it may suggest they have a social or communication disorder.
More information about CHAT can be found online at www.nas.org.uk. Autism is
rarely detected before the age of three, and for other social communication
disorders it can be even later. The earlier a diagnosis is made, the earlier
intervention can be put in place and the stress on your family reduced. That’s
why CHAT is used at this stage.
At school entry
Your child will have a full health review. This may include having their weight and
height measured and their vision and hearing tested. Once your child reaches
school age, the school nursing team and school staff will help support your child’s
health and development. They will work with you to make sure they are offered the
right immunisations and health checks and will give you advice and support on all
aspects of health and wellbeing, including emotional and social issues.
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Background information
Health services
Identifying disability
and making a diagnosis
If you are in regular contact with a paediatrician, they will be assessing your child
all the time. If they weren’t sure what was wrong in the early days before your
child left hospital, they will be using their diagnostic skills to decide if your child
needs ongoing medical intervention or if they have a disability.
Paediatricians often start with a developmental assessment that includes
gathering information from all those professionals who know your child and
using checklists to structure their observations. This usually includes a
developmental, family and personal history and an examination of your child. If
you have been receiving support for some time and are using the My Orange
Book or the Early Support Family Pack you can use the opening sections of My
Orange Book and/or Introducing ourselves section of the Family file to help you
give other professionals the information they need.
At the end of this process, the paediatrician will arrive at their conclusion and, if
possible, make a diagnosis. At this point, they may be able to explain why your
child has a particular medical condition or disability, but they may not.
Further assessment, investigations and tests may be needed to arrive at a firm
diagnosis.
Talking about disability for the first time
The way in which you are told that your child has a disability can affect your
feelings, attitudes and expectations for a very long time to come and may also
affect how you use the support that health services can provide.
It’s important to understand that doctors and other professionals may not find it
easy to tell you that your child has a disability - particularly if there is no clear
diagnosis. They will understand that you need some factual information and will
share with you what they know.
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Background information
Health services
If getting a diagnosis is a long and evolving process, you should expect to receive new
information at different stages of the process. Sometimes however, no clear diagnosis
can be made. If this is the case, a paediatrician will do all they can to answer your
questions and will often refer your child to other specialists for further assessment.
Many local services have developed guidelines and training for people to help
them share information about disability with parents in the way that best meets
the needs of families. If you would like to know more about this, find out about
the Right from the Start initiative by visiting Scope’s website:
http://rightfromthestart.org.uk or email: [email protected]
Many families say that they need as much information as possible in the early
days. Voluntary organisations or charities can often tell you a lot about conditions
that are relevant for your child and can be particularly helpful. They can also
often put you in contact with families who are in similar situations. You can read
more about voluntary organisations in another booklet in this series - the one on
Useful contacts and organisations.
Referral to other services
Different areas organise paediatric health services in different ways. You can always
ask your health visitor or family doctor (GP) how things are organised in your area.
If a paediatrician thinks that your child needs help and support from other health
professionals, they will make a referral to other services. If your child has been in
hospital for some time, they are likely to make the referral when your child
leaves hospital. You may get a visit from other professionals while your child is
still in the Special Care Baby Unit or on the ward.
A paediatrician may also refer your child to a Child Development Team or Child
Development Centre where they can be assessed and helped by a range of
different health professionals. The team may include an occupational therapist,
physiotherapist, speech and language therapist and dietician. Some Child
Development Teams and Child Development Centres also have teachers, social
workers and clinical psychologists working with them.
You can find out more about what these health professionals do in the next section,
or look at another booklet in this series - the one called People you may meet.
Having a team of people working together should make it easier for you to
receive a comprehensive assessment, which looks not only at your child’s
developmental needs but also at the needs of everyone in your family.
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Background information
Health services
Section 10 of the Children Act 2004 requires local authorities and their ‘relevant
partners’ to cooperate to improve children’s well-being. This should mean that
different agencies like education, health, housing and social services work
together to provide you with the right sort of help when you need it. You can
read more about the help that social workers can provide in another booklet in
this series - the one on Social services.
Waiting lists
It’s not unusual for your child to be referred on to other services and then to find
that they’re on a waiting list. This is because demand for specialist services is
high. Some therapy services have to operate a waiting list as their teams are
small and they have lots of children to see.
If you’re being referred to a hospital then you can choose which hospital you
would prefer to be seen at. The NHS Wales website www.wales.nhs.uk/ gives
you more information about this and lists the choice of hospitals offered in your
area. Details of NHS waiting times for services are also available via the Welsh
Assembly Government website at http://tiny.cc/KcoNy
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Background information
Health services
Other health professionals
who might be involved with your child
Dietitians
A dietitian is a health professional who gives advice about nutrition and
swallowing or feeding difficulties. Sometimes children need nasogastric or
gastrostomy feeding to receive the nutrition they need. This means liquid feed is
given through a tube that is inserted directly through the abdominal wall or
through a narrow tube that is passed through the nose, down the food pipe and
into the stomach. A dietitian makes a full nutritional assessment before feeding
begins in this way. They can advise you, the hospital and community health staff
about the feed type, the amount, the method of administration, the feeding
regimen and any equipment required for your child. Dietitians are often
responsible for ordering supplies and equipment and will make sure you have a
regular supply of the things you need to feed your child.
Occupational therapists
An occupational therapist (OT) helps children improve their developmental
function by therapeutic techniques, environmental adaptations and the use of
specialist equipment. OTs are concerned with difficulties that children have in
carrying out the activities of everyday life. This could include sitting in a chair,
holding a spoon and fork or drinking from a cup. They can also advise on how
you as a parent can carry your child up and down stairs safely. OTs work for both
the health service and social services.
Paediatric OTs working for the health service assess children for things like
specialist chairs or cups. You may also come across health service OTs once your
child starts nursery or school.
Social services OTs are the people to contact if you think you might need housing
adaptations of any kind. They can carry out an assessment for minor adaptations
(like providing a portable ramp for your front door) to major adaptations like an
extension. Social services OTs can also tell you about Disabled Facilities Grants. If
you are eligible, these grants can help towards the cost of providing adaptations
and facilities to your home. A very helpful leaflet about Disabled Facilities Grants
is available from Communities and Local Government Publications, PO Box No
236, Wetherby LS23 7NB. Tel: 0300 123 1124, Fax: 0300 123 1125. e-mail
[email protected]. Or you can download a copy
fromwww.communities.gov.uk/documents/housing/pdf/138592.pdf
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Background information
Health services
Physiotherapists
A physiotherapist is a health professional specialising in physical and motor
development. They are concerned with maximising children's potential. This
means they will assess your child and develop a plan that might include helping
your child control their head movement, sit, roll over, crawl or walk.
Physiotherapists can also teach you how to handle your child at home for
feeding, bathing and dressing, and advise on equipment that might help your
child’s mobility. Some families meet a physiotherapist for the first time very early
on, when their child is in a Special Care Baby Unit or on a hospital ward.
A physiotherapist may see your child at home, or in other settings such as a
nursery placement or child development centre (CDC). They work closely with
families, with other healthcare professionals and anyone else involved in caring
for children - for example working with occupational therapists to ensure any
specialist equipment your child needs is provided and working with orthotists to
assess your child’s need for special footwear.
Speech and language therapists
A speech and language therapist specialises in speech, language and
communication problems. They assess, diagnose and develop programmes of
care to help children develop communication skills. They offer support and
advice to parents and to other professionals about developing communication
that may be verbal (i.e. using speech) or non-verbal, using signs, symbols or
communication aids. Some speech and language therapists also specialise in
feeding, eating or swallowing disorders. There are many causes of speech and
language difficulties. Some speech and language therapists specialise in
working with particular populations of children - for example, deaf children or
children with cleft lip and palate. They work with children of all ages. Speech
and language therapists work as members of teams in many different settings
including health clinics, hospitals, nurseries, Sure Start Children’s Centres and
schools. They work closely with families, medical and health staff, teachers and
social workers, depending on children’s needs and circumstances.
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Background information
Health services
Children’s hospices
There are many children’s hospices around Wales that support children who have
a life-threatening or life-limiting condition. Children’s hospices provide a range
of services that can include a residential stay (with you, your partner and the
other children in your family staying in a family flat on the premises if that’s what
you’d like), outreach support at home provided by a nurse or play worker, or
daytime care in the hospice building.
You can refer your child and family to a children’s hospice or ask a health
professional to do it for you. You can find out more about children’s hospices
from:
Children's Hospices UK
4th Floor
Bridge House
48-52 Baldwin Street
Bristol
BS1 1QB
Tel: 0117 989 7820
Fax: 0117 929 1999
Web: www.childhospice.org.uk
Email: [email protected]
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Background information
Health services
Health law and standards of service
The National Assembly for Wales decides on its priorities and allocates funds made
available to Wales from the Treasury. It also develops and implements policies
which reflect the particular needs of the people of Wales. Decisions are made by
politicians who are accountable through the ballot box to the voters of Wales.
The Assembly has the power to develop and implement policy in health and
health services.
One of the most important things to happen to Children's Health Services in
recent years has been the publication of the National Services Framework for
Children, Young People and Maternity Services in Wales (Children's NSF). The
Children's NSF has set new standards for all universal service for children in
Wales including the NHS and social services. A short guide to the Children's
NSF has also been produced to tell you exactly how the NSF will affect the
services you use. For further information about the Children's NSF and to
download the NSF and Short Guide go to:
www.wales.nhs.uk/sites3/home.cfm?OrgID=441.
In addition, the Welsh Assembly Government established the Children and Young
People’s Specialised Services Project (CYPSS) to build on and be used in
conjunction with the NSF.
The CYPSS was set up to develop high quality, fair and sustainable specialised
children's health services across Wales: based on the best available evidence about what works
with children and their carers at the centre of all planning and provision.
At the end of 2008, the CYPSS published a series of standards for specialised
services for children and young people.The standards apply to all children and
young people’s specialised services.
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Background information
Health services
There are standards for each particular specialised service containing key actions
(KAs) related to that specific service. The services covered by these standards
are:
Paediatric Critical Care
Neonatal Services
Paediatric Neurosciences
Paediatric Oncology
Paediatric Palliative Care
Paediatric Anaesthetics and Surgery
Nephrology
Cardiology and Congenital Cardiac Services
(including access to Cardiac Surgery)
Endocrinology
Gastroenterology, Hepatology and Nutrition
Inherited Metabolic Disease
Respiratory
All of these terms are explained in the Glossary at the end of this booklet.
You can find out more information and download or order copies of these
standards from www.wales.nhs.uk/sites3/page.cfm?orgid=355&pid=13958.
The standards documents are written from an All Wales perspective and apply to
all children and young people with that particular health need, wherever they live
in Wales.
The Autistic Spectrum Disorders (ASD) Strategic Action Plan for Wales (2008)
Wales is fortunate to have the first government-led strategy for ASD in the world.
This Action Plan was developed in collaboration with an All Wales External
Working Group on Autism consisting of key stake holder groups both in the
voluntary and statutory sector as well as service users. It is a ten-year plan and
aims to give a clear direction for the development of necessary services for
individuals with ASD and those living and working with them. It will ensure that
specific and measurable actions are undertaken.
It is a plan that covers services from the cradle to the grave and links into a
number of other Welsh Assembly Government policies such as The National
Service Framework for Children, Young People and Maternity Services (Welsh
Assembly Government, 2005) and Making the Connections: Delivering Beyond
Boundaries (Welsh Assembly Government, 2006).
Copies can be obtained from the Children’s Health and Wellbeing Team, Welsh
Assembly Government, Cathays Park, Cardiff, CF10 3NQ Tel: 02920 825660
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Background information
Health services
How health services are organized
in Wales
Currently, the NHS in Wales provides 4 levels of care:
1. Primary Care – this is provided through GPs, opticians, dentists,
pharmacists and other healthcare professionals such as health visitors
2. Secondary Care – this is more specialist care provided through hospitals
3. Tertiary Care - provided through specialist hospitals treating particular
types of illness such as cancer
4. Community Care - provided by the NHS in partnership with local social
services to help vulnerable people.
In addition, NHS Wales provides specialist services that support medical diagnosis
and treatment and disease prevention, such as screening services.
Local Health Boards (LHBs) have been set up across Wales. Local Health Boards
(LHBs) are responsible for planning, designing, developing and securing the
delivery of:
primary services
community services
in-hospital care services
specialised and tertiary services
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Background information
Health services
There are seven LHBs. They are: Aneurin Bevan LHB – covering Blaenau Gwent, Newport,
Monmouthshire, Torfaen and Caerphilly
Cwm Taf LHB – covering Rhondda Cynon Taf and Merthyr Tydfil
Cardiff and Vale University LHB – covering Cardiff and the Vale of
Glamorgan
Abertawe Bro Morgannwg University LHB – covering Swansea, Neath
Port Talbot and Bridgend
Hywel Dda LHB - covering Ceredigion, Pembrokeshire and
Carmarthenshire
Betsi Cadwaladr University LHB - covering all of North Wales
Powys Teaching LHB – covering Powys
One of the key requirements of LHBs is to ensure that all services work better
together. Local Health Boards must take early and decisive action to develop and
improve joint working and ensure that services are developed which meet
identified need; provide high-quality care close to home; and operate in
partnership to ensure that people are at the centre of service design and delivery.
Making a complaint
The information for this section was adapted from the Citizen’s Advice Bureau
website – www.adviceguide.org.uk/wales
You can raise any concerns immediately by speaking to a member of staff - for
example, a doctor, nurse, dentist, GP or practice manager.
If you wish to make a complaint or comment about the services provided by your
local health service, you can also approach Community Health Councils (CHCs).
These are independent organisations which can help you make a complaint
about NHS services or your NHS practitioner. For more information about CHCs,
go to the website of the Board of Community Health Councils in Wales at
www.wales.nhs.uk.
You can also get help to make a complaint about your NHS practitioner from
your local Citizens Advice Bureau. For your nearest Citizens Advice Bureau see
www.adviceguide.org.uk/wales.
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Background information
Health services
The NHS Wales complaints procedure is in three stages:Stage 1 - Local resolution
You should normally make a complaint within six months of an event occurring, or
6 months of becoming aware that you have something to complain about. Your
complaint should be made in the first instance to the organisation that provided the
service. This stage of the complaints procedure is called local resolution.
You should receive a response from a primary care practitioner within 10 working
days or from the chief executive of the NHS organization within 25 working days
- though this deadline can be extended with your agreement. You should be kept
informed of progress if this is not going to happen.
Stage 2 - Independent Review
If you are unhappy with the response to your complaint, you can ask for an
Independent Review. You make this request to the Independent Review
Secretariat, a body that is independent of the NHS. The address of the Secretariat
will be given in the letter which informs you of the results of the Local Resolution.
The request for an independent review must be made within four weeks of
receiving this final letter.
Stage 3 - The Health Service Ombudsman
If you are still unhappy after local resolution and independent review then you
can complain to the Public Services Ombudsman for Wales. The Ombudsman
considers complaints about poor treatment or services provided through the NHS
in Wales. The Ombudsman is independent and impartial. To contact the Public
Services Ombudsman for Wales:Public Services Ombudsman for Wales
1 Ffordd yr Hen Gae
Pencoed
CF35 5LJ
Tel: 01656 641 150
Fax: 01656 641 199
E-mail: [email protected]
Website: www.ombudsman-wales.org.uk
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Background information
Health services
Glossary
Cardiology - type of health care that deals with the heart and disorders of
the heart
Child development team (CDT) or child development centre (CDC) - a group of
professionals who work together to assess a child’s development and needs, to
offer advice and to provide therapy. A CDT is usually led by a paediatrician and
can include speech and language therapists, occupational therapists,
physiotherapists, educational psychologists, dieticians, portage workers, specialist
health visitors and advisory teachers. In some places, teams are located in one
place and may also include social workers.
Childminder - someone who provides full-time or part-time care and play and
learning opportunities - usually in their own home. Childminders are selfemployed and may work flexible hours, offering care early in the morning, in the
evenings or at weekends.
Children’s National Service Framework Wales (NSF) - a national framework
that is being used to develop national standards for services for children
provided by health.
Congenital Cardiac Services - services treating children (and adults) with heart
problems that exist when the baby is born. Problems include holes in the heart,
narrow arteries, valves that do not work properly and muscle disorders.
Endocrinology - services dealing with disorders of the endocrine (hormone)
system. It includes a focus on developmental events (for example, growth and the
coordination of metabolism) that depend on specialised cells in the endocrine
system.
Gastroenterology - services that deal with the digestive system and its disorders.
Hepatology - services that deal with the liver, gallbladder and pancreas and
their disorders.
Hospital discharge meeting - a meeting held after a child has spent a period of
time in hospital. All the professionals who have been involved with you and
your child will be invited to the meeting - for example, doctors and nurses. The
aim is to plan with you the kind of support you will need when you return home.
Inherited Metabolic Disease - these are genetic (inherited) disorders of the body’s
biochemistry. For example, thyroid disease, albinism, phenylketonuria (PKU)
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Background information
Health services
Integrated Children's Centres - provide a range of services for families and young
children in one place. They often include health services and some provision for
children with special needs.
Local authority - the local government agency that provides services for families
and children.
Local Health Board (LHBs) - responsible for planning, designing, developing and
securing the delivery of local health services. They work alongside the local
authorities in their areas in planning long-term strategies for dealing with issues
of health and well-being.
MMR immunisation - an injection to immunise children against measles, mumps
and rubella
Neonatal Services - these focus on looking after the infant immediately after birth
and usually during the first month or so after birth. They include the services in the
Special Care Baby Unit (SCBU) and the Neonatal Intensive Care Unit (NICU)
Nephrology - services concerned with the kidney and kidney disorders
Nurseries - provide care and early education for very young children.
Nutrition - concerned with how and what people eat and drink.
Paediatric Anaesthetics and Surgery - looking after children having surgery/
operations and other procedures such as MRI scans.
Paediatric Critical Care - services for critically ill children
Paediatric Neurosciences - services for children with brain or central nervous
system problems – for example, epilepsy, brain tumours
Paediatric Oncology - services for the treatment and management of children
with cancer
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Background information
Health services
Paediatric Palliative Care - services focused on the care and support of children
with life-limiting illnesses and their families
phenylketonuria (PKU) - an inherited (genetic) disorder that increases the levels
of a substance called phenylalanine in the blood. If PKU is not treated,
phenylalanine can build up to harmful levels in the body, causing intellectual
disability and other serious health problems.
Referral - a professional, for example a doctor or health visitor, makes a referral
when they pass on information about you and your child and the kind of help
they think you need to another professional or service and asks them to make
contact with you.
Respiratory - services concerned with breathing and breathing problems
Statutory sector – public bodies that are funded by the government and have
legal responsibilities, such as social services and health services
Tertiary services - hospitals, clinics and other health services that provide
specialist treatment and support.
Voluntary organisation / voluntary groups - provide information and services
linked to particular needs. They are usually charities and operate at national
and local level. Local organisations sometimes receive a grant from the local
authority, council or health service to provide a service, but they usually also
need to fundraise. You may be asked to pay a small contribution towards the
cost of any service provided by a local voluntary organisation.
22
Background information
Health services
About Early Support
Early Support in Wales is the Welsh Assembly Government’s mechanism for
achieving better co-ordinated, family-focused services for young disabled children
and their families across Wales.
Early Support builds on existing good practice. It facilitates the achievement of
objectives set by broader initiatives to integrate services, in partnership with families
who use services and the many agencies that provide services for young children.
To find out more about the Early Support programme and associated training
opportunities and to view other materials produced by the programme, visit
www.earlysupportwales.org.uk
This booklet is one in a series produced in response to requests from families,
professional agencies and voluntary organisations for better standard information
about issues and services that affect the lives of families with disabled children. It
is based on the Background information booklet: Health Services, adapted by
kind permission of Early Support, a UK government initiative in England that was
funded by the Department for Children Schools and Families. This version of the
publication was adjusted for the Welsh context by the Early Support Wales
implementation team.
The other titles in the series are:
Introduction
Education
People you may meet
Financial help
Social services
Childcare
Statutory assessment - Education
Useful contacts and organisations
Other Early Support information about services is available separately, or as part
of the Early Support Family pack. The Family pack helps families who come into
contact with many different professionals to co-ordinate activity and share
information about their child through the first few years of life, using a Family
file. The Early Support Family pack contains a full set of Background information
booklets and a copy of the Early Support Family file.
To find out how to obtain copies of any of the Early Support materials mentioned
here, see www.earlysupportwales.org.uk
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Background information
Health services
Acknowledgements
Early Support Wales would like to thank the many people that have been
involved in the development of these resources - in particular, families.
We would like to acknowledge the contribution of the following to the
development of the Family pack and Background information booklets and more
recently for their help in revising these resources to ensure they are appropriate
for the Welsh context:
Action for Children
Advisory Centre for Education (ACE)
Autism Cymru
Care Coordination Network UK Wales
Children in Wales
Contact a Family and Contact a Family Wales
Council for Disabled Children
Down’s Syndrome Association and Down’s Syndrome Association Cymru
Early Support Wales Implementation team
ICAN
Learning Disability Wales
Mencap
Mudiad Ysgolion Meithrin
National Autistic Society
National Children’s Bureau (NCB)
National Deaf Children’s Society (NDCS) and NDCS Cymru
Royal National Institute of the Blind (RNIB) and RNIB Cymru
Royal National Institute for Deaf people (RNID) and RNID Cymru
Scope and Scope Wales
Sense and Sense Cymru
SNAP Cymru
TreeHouse
Wales Pre-school Providers Association (WPPA)
Welsh Assembly Government
24
Copies of this publication can be obtained from:
Welsh Assembly Government Publications
PO Box 90
BARGOED
CF81 9YE
Tel: 0845 6044648
Email: [email protected]
Please quote ref: ESW/20/02/11
© Crown copyright 2011
Extracts from this document may be reproduced for
non-commercial education or training purposes on
condition that the source is acknowledged.
ISBN: 978 0 7504 5298 4
www.earlysupportwales.org.uk