Update to this post:
The below post talks about two petitions. I've since discovered that the first of the two petitions mentioned is actually completely different from the one I thought I was writing about. I am very embarrassed. I'll have to go looking for the original petition and add a link to it when I can track it down.
Since this post was written the authors of the first petition have been in touch and we have been exchanging views. I am very grateful to them for being in communication.
I'm going to have to do another post now I think, with my thoughts on this particular petition - or maybe it will be better to add a long comment to this post. I'll think it through and do one of those two things as soon as I can.
For now I felt it was important to flag up my error and apologise profusely to the Lorraine Cleaver, Sandra Whyte and Marian Dyer, authors of the petition to the Scottish Parliament, for getting them confused with a petition it seems they actually have no involvement with.Here is the rest of this post:
Recently I've seen two thyroid patient petitions in the UK, there may be more circulating. These petitions indicate to me that there are a significant number of thyroid patients here who are terribly unhappy with the treatment they are getting from their doctors. I knew that was the case before seeing these petitions. It's a crying shame. Something needs to be done. I believe that quality and consistency of care for hard to treat hypothyroid patients needs to be addressed urgently. However I don't think these petitions take the right approach and so I deliberately haven't got involved with either of them.
I promised the authors that I would share some thoughts on this blog. It has taken me a while but I'm doing it now. I believe the authors are well meaning and open to other people's points of view. I hope this post might be helpful for them and for anyone else who is interested in thyroid patient care and campaigning.
Some people are unhappy with their doctors, sadly that's a fact. However, I know that there are also lots of great doctors out there - and many patients (thyroid and other) who are very happy with the care they get. That's important to remember. Our precious NHS is under attack, good doctors need our support.
(When I was first diagnosed with hypothyroidism I went on a thyroid chat board seeking support and was instantly told "you will have to battle your doctors, they are idiots" - neither of these things turned out to be true and it was very unhelpful, when I was feeling unwell and vulnerable, to have those negative expectations dumped on me.)The first of these petitions is here (this link has been added to this post along with the update note above, to which it relates) - and a whole load of information on how it is progressing is on a Facebook group here
The latest petition I am aware of is here (since the update note above was added, the rest of this blog post now only relates to this latest petition and not to the petition to the Scottish Parliament)
Let me state my position:
- I am a "hard to treat" autoimmune hypothyroid patient myself and I have had (sometimes continue to have) a very difficult time with my condition.
- Through this blog and my volunteering work I talk to a lot of other thyroid patients (hypothyroid and other) and the ones I talk to are often having a difficult time and frustrated with the healthcare they are receiving. That said, I believe it to be true that, statistically, we are not the majority of thyroid patients - because most are easily treated, don't have any problems and so don't have any need to talk about their condition.
- I have also spoken to quite a few endocrinologists, both for my own treatment and because I organise regular meetings in London, where top class endocrinologists come and give talks to groups of patients and answer questions. Without exception I have been impressed with the knowledge and commitment of these doctors and I learn something new from every one of them. Clearly thyroid hormone function is a vast subject - and the human body as a whole is vaster still. Medical science is amazing.
- I believe strongly that for those of us who do not respond quickly and easily to standard treatment for our hypothyroidism, there needs to be a review - and improved quality and consistency - of care, because too many people are getting a raw deal from their GPs who sometimes refuse to refer patients for specialist help - and sadly sometimes specialist help means an endocrinologist who knows a lot about diabetes but is not as knowledgeable as they need to be about difficult thyroid cases - so a referral doesn't always lead to a solution for the patient. If your blood tests are "normal"yet you still feel ill and your GP cannot help you should be referred to an endocrinologist, if your endocrinologist can't help you I think they should seek the view of another specialist.
- I have lobbied the UK's leading charity for thyroid patients (British Thyroid Foundation) about this issue and they have told me they are now undertaking a strategic project to look specifically at Hypothyroid Care. I have high hopes for this project because I am confident in the professionalism of this charity which has been established for over 20 years. I believe they will go about talking with the medical profession in a way that will enable meaningful dialogue and I am certain that change for patients can be achieved via their methods.I hope to have the opportunity to contribute to that project in some way.
As patients we need to work in collaboration with our doctors, with respect for each other and open minds. That is what I'm committed to and I firmly believe that is the only way that makes any sense. So I didn't sign the first petition and I won't be signing the second and these are my reasons.