Name of MP
House of Commons
Westminster
London
SW1A 0AA
Date
Dear (Name of MP),
Adults with spina bifida – please tackle this discriminatory treatment,
which is threatening our health and quality of life.
I am an adult with spina bifida, a condition that is present at birth and leads to
lifelong complex disability. My needs for specialised, multi-disciplinary health
care are similar to the needs of adults who have acquired, through trauma or
accident, a serious lifelong spinal injury. I am a member of Shine, the national
organisation that represents over 10,000 people affected by this condition.
The Government recognises that whilst most health care can be delivered locally
under the new NHS frameworks, certain conditions require specialised services,
which are more efficiently and effectively commissioned nationally through
National Specialised Commissioning.
Last year the NHS reviewed which conditions should be included within this
framework, and national Clinical Reference Groups (CRGs) to oversee the
delivery of these services were set up. There is a Clinical Reference Group and a
specified service for people with spinal cord injury but adults with spina bifida,
despite having many of the same needs as those with spinal cord injury
have not been recognized as needing a Clinical Reference Group, or a
special service commissioned nationally.
To summarize: If an able-bodied person sustains a lifelong complex spinal injury
they qualify for a lifelong specially commissioned service overseen by its own
CRG, national recognition and the services of Spinal injury Centres or similar. If,
like me, you are born with a ‘spinal injury’ you do not. I am left with no clear
recognition of my condition, no care pathway and a hotch potch of services and
appointments which view me as a set of separate conditions rather than an
individual with a single but complex condition. I know that others with my
condition receive nothing at all; they do not understand their own condition and
therefore do not access services until a crisis occurs and lasting damage to
health has occurred.
We believe that this is a fundamental inequality, and I am asking for your
support in securing the same level of recognition and service for adults
with spina bifida as is given to people with a spinal cord injury.
In the past people with spina bifida were not expected to live for a normal
lifespan; now they are and there is a ‘bulge’ of people who are now entering later
life. Our health care needs are growing more complex and acute, and people are
sustaining damage and injury through the lack of a specialised multi-disciplinary
service, and widespread ignorance of our conditions throughout GP/ mainstream
services.
This situation needs urgent recognition and appropriate action, and I urge you to
raise this matter with your senior colleagues and the NHS advisers responsible
for this decision.
Thank you very much for your help.
(signature)
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More information on the nature of spina bifida/hydrocephalus can be obtained
from Shine Charity www.shinecharity.org.uk
e-mail: [email protected]