Template letter to local MP/Local Authority
[Your Name]
[Your Address]
[Your Postcode]
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The details below are provided as an example only. You will need to determine who the Local
Authority is in your local area. Search on Google and if necessary email to check the relevant Health
Dept within the L.A. http://local.direct.gov.uk/LDGRedirect/Start.do?mode=1
Hertsmere Borough Council
Civic Offices
Elstree Way
Borehamwood
Herts
WD6 1WA

The details below are provided as an example only. You will need to determine who the MP is in your
local area. Search on Google: http://www.parliament.uk/mps-lords-and-offices/mps/
Oliver Dowden MP
House of Commons
London
SW1A 0AA


Please delete the content in red, keeping either the Local Authority address OR the MP Address as
appropriate.
Please fill in the content contained within the [square brackets]
[Date]
Dear [Name of MP/Local authority],
Re: The lack of knowledge of EDS from medical professionals leading to delayed correct diagnosis.
I am writing this letter in regards to the lack of knowledge of Ehlers-Danlos syndrome (EDS) from medical
professionals in [Your catchment area]. This can create delayed, correct diagnosis .This is not only my concern,
but is a major issue experienced by the EDS community throughout the UK. It is estimated that about 1 in 5,000
are correctly diagnosed with EDS, however recent clinical experience suggests that EDS is much more common
than expected, with over 103,500 cases missed annually. EDS is an officially recognised, multisystemic, inherited
connective tissue disorder that can manifest in several diverse forms. As a result, people suffering from EDS often
have mobility, or mental health issues. A fact sheet detailing my specific type of EDS has been attached following
this letter.
The main problem stems from a lack of awareness of EDS. Patients are constantly misdiagnosed with similar
chronic conditions such as Marfan’s and Fibromyalgia, or are dismissed as there is a belief that the condition does
not exist. Patients can wait for more than 10 years to finally obtain a diagnosis. Some are even made to believe
they suffer from a mental health disorder or with parents being blamed for child abuse due to the symptoms the
condition can present. This can lead to medical malpractice and increased NHS waiting times, causing lawsuits
and needlessly costing the government money. I believe that through better management and understanding of
EDS, it will be mutually beneficial that the issue is resolved sooner rather than later.
[Add any personal experiences about the issue here. Make sure to keep sentences concise and to the point.]
As your constituent, I would like you to use your influence to raise awareness about EDS within the medical
community. We urgently need more doctors and medical staff to be made aware of the complexity and
management of EDS. Currently there are only two scheduled appointments given, in which a healthcare
professional can spot the symptoms and correctly diagnose EDS. There needs to be increased training given to
local healthcare professionals to better identify EDS. In addition, if there is a suspicion that a patient may have
EDS, then there needs to be further time allocated to these individuals.
In the Conservative manifesto, it is stated that £8bn is to be spent to accommodate for the NHS’s five-year
forward plan. Three priorities included in the plan aim to invest in and improve primary care, elective care and
specialised care. There needs to be more research and training given to GPs and medical professionals to ensure
that EDS is not overlooked and that patients are treated correctly. This in turn will be of benefit to both parties,
as an incorrect diagnosis leads to wasteful treatment and may even encourage the onset of mental health
disorders. This problem will not be resolved by only increasing the number of staff in hospitals. It is essential to
introduce EDS into medical schools throughout the country, so that the next generation of doctors are mindful of
this ignored disorder. This would provide an inexpensive and simple solution to raise awareness. Following this,
there needs to be an increase in the number of EDS specialists in the UK. Currently, there are only 8 EDS specialist
centres in the UK, while other rare genetic disorders such as Cystic fibrosis have over 20. Another mantra
stressed in the manifesto is the aim to save £22bn within the health care system. In order to achieve this, there
needs to be a vast decrease in the inefficiencies of the diagnosis and referrals of EDS. This will also reduce the
prevalence of mental disorders in EDS patients, meaning further savings on the already overstretched mental
health services within the NHS, thus allowing the money to be better used for treating the patients who need it
the most.
I eagerly await your response and thank you in advance for your support on this matter.
Yours sincerely,
[Your name and contact info]