How to raise concerns - perhaps another route

In brief due to low energy and tasks ahead - I am noticing more and more frustration on this site re poor diagnosis and poor treatment with GMC replies being less than helpful.

Another member had the cause read out in Westminster Parliament about 3 months ago healthunlocked.com/thyroidu...

I followed up by writing to

1. My MP David Heath - too deep in water in his Somerset wellies and reply trusts GP's are on the case haha!

2. No reply from Jane Ellison but

3. Jim Shannon DUP Certainly gave the most positive reply offering his support :-) YAY

mydup.com/who-we-are/jim-sh...

So if you are angry, frustrated, want to tell your story or just tired of your plight perhaps a letter to him at Westminster

via email parliament.uk/site-informat...

or write to:-

Jim Shannon DUP

Ballynahinch

36a Main Street

Ballynahinch

Co. Down

BT24 8DN

Some personal stories might help to illustrate the issues - again!

The Health unlocked site is shortening the links so pm me if you need more detail.

Good Luck All

Last edited by

12 Replies

oldestnewest
  • Thank you for letting us know about this and, yes, there are some very sad experiences on here.

    Am currently in dealings with local MP re another matter that is dragging me down but at least it's non-health related. Is Jim Shannon your local MP?

  • No he is Health spokesman for the DUP and is said to attend most health discussions : )

  • This is the link to the debate at Westminister and Jim was active in the discussion.

    publications.parliament.uk/...

    I live in Northern Ireland, but Jim is not my MP. I have been writing to another MP, Naomi Long, who is interested but unfortunately was not at the Westminister debate.

  • Thanks for the link - it's very interesting to read about a small step in the right direction.

  • Great to find another one who is interested Sandy ! :-)

  • Thought you'd be interested to know I have today received a five page letter from Jeremy Hunt, following 'Humphrey's' call to write to Jane Ellison through our MP. Unfortunately, I do not have a scanner, but to give you a gist of the letter, here is his answer to point 8 of Humphrey's template letter :

    8. Lastly, and perhaps more importantly, we need an acknowledgement that current diagnosis and care is inadequate:

    " While I note your constituent's concerns, it is for NHS organisations to follow clinical guidance on the diagnosis and management of conditions. People who are unhappy with the standard of care they receive can raise their concerns with the provider or commissioner of care through the NHS complaints procedure. "

    His answers to the rest of our questions are in the same vein - all talk and no action ! We are sent in ever increasing circles and no one is listening or prepared to change anything.

  • see below :-)

  • "His answers to the rest of our questions are in the same vein - all talk and no action ! We are sent in ever increasing circles and no one is listening or prepared to change anything."

    My experience is the same. I contacted the hospital chief executive. I haven't received any reply so far.

  • If you don't receive a reply, write again until you do and keep on writing. It took me 5 attempts to my Hospital CEO and eventually they invited me to a meeting with the Head of the Department of where I was making the complaint. Since then I have been invited onto a new design group for commissioning a new department. So sometimes you just have to be very very persistent but in a very factual and firm way.

    This is an extract from the response to the Healthcare Commission report into NHS Complaints.

    The Director of the Patients Association Katherine Murphy said:

    “The findings in this report reflect the problems people tell us about daily when calling our help line. Many callers are unhappy with poor complaints handling and poor communication. Whilst there might always be times when healthcare falls short of standards, there is no excuse for every such occasion not to be handled with the greatest of care.

    We are worried about the high percentage of complaints being upheld. We are told that the system is cumbersome, variable and takes far too long. If the NHS is to move into a more patient orientated, choice driven service then its staff and management need to become more open and more accepting of complaints and they need to respond constructively when something goes wrong. At a time when patients are being encouraged to write feedback on the NHS Choices websites this report shows that the NHS still has a long way to go in responding positively to criticism from its users. Now is the ideal time to make sure that the system lives up to the rhetoric and puts patients at the centre of the service. The complaints system should be based on this central premise. Every complaint should matter. Ignoring complaints results in wasted resources, frustrated patients and the spread of cynicism about the system and its staff. The rhetoric needs to reflect the reality.”

  • Thanks for sharing Polaris - pretty much the same as the reply from my MP David Heath. That's why I was intrigued by Jim Shannon's reply.

    Wondering whether I should send him a copy of Tears Behind Closed Doors as a present ? What do you think?

  • Thanks Sarah for the info above. I will write to Jim Shannon. Good idea about the book. I was much affected by Marram's story here on HU, "My journey from misery to hope".

  • It it helps anyone to write, here is my version of a letter based on Humphrey's original template:

    In December 2013 Mrs Caroline Spelman, Conservative MP for Meriden, raised the subject of hypothyroidism in Parliament. Here is a link to the Hansard debate, for your convenience: publications.parliament...

    A large number of people in this country with thyroid disease find that the limited treatment options available to them do not help them. Many have difficulty getting diagnosed at all. I belong to an online community where such people share their problems : Health Unlocked - Thyroid UK.

    Mrs Spelman raised the subject as a result of one of HU-Thyroid's Trustees contacting her. The Parliamentary Under-Secretary of State for Health (Jane Ellison) was present. Her response to Mrs Spelman is at 11.13 on the Hansard report linked above. This was knowledgeable, as far as it went. However, the fact that there are so many people still so unwell with thyroid problems points to some kind of failure in the current diagnosis and treatment of thyroid malfunctions (there are a number of different - sometimes very subtle - ways in which thyroids can malfunction).

    Mrs Spelman recommended setting out some of the more important changes the HU-Thyroid website members would like to see in the way the NHS treats thyroid patients. She advised that we write to Jane Ellison, via our MP, with our concerns. Below is the list of things we would very much like to see improved:

    1. More research into what is causing the epidemic of thyroid disease across the world.

    2. Better training for Endocrinologists and GPs.

    3. Investigation into a broader panel of treatments for thyroid malfunction. Many hypothyroid patients do well on Levothyroxine alone, the only drug offered by the NHS. However, a significant number do not and become desperately unwell and unable to function (my sister is one of them).

    4. A regular, broad, panel of blood tests to be carried out on thyroid patients who still exhibit symptoms, to assist in diagnosis and treatment. At present, most GPs rely on the TSH blood test alone (which varies throughout the world) and mainly disregard symptoms. A malfunctioning thyroid affects every cell and organ in the body. (In my own case, once I was on the right thyroid treatment, my heart, blood pressure and cholesterol problems were resolved and I was able to discontinue expensive drugs). This has huge implications for savings in the NHS.

    5. Investigation into why the NHS is paying exorbitant prices for T3 when the rest of Europe is not!

    6. A ban on the practice of drug companies paying commission etc to surgeries and GPs to use their more expensive drugs.

    7. Thyroid issues to be acknowledged under occupational health legislation to help safeguard individual employees, and potential employees, ensuring that the symptoms and impairments experienced are considered by NHS and employers; the current failure to do this is ethically wrong and discriminatory .

    8. Lastly, and perhaps most importantly, we need an acknowledgement that current diagnosis and care is inadequate.

You may also like...