What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

A few days later... decision made

A few days on from my last post, the dust (in my mind) has settled and I have reached a decision.

I'm changing doctors.

I've taken extensive advice from various local sources and I've chosen a practice with an excellent reputation which I hope will be better than the one I'm leaving. I've filled out all my forms and I dropped them off at my new surgery today. They've said they'll take me. Actually it was easy.

it's a new dawn.....

Why did I put up with all the problems with my old doctor? Why did I spend all that time writing letters back and forth trying to sort things out? Why on earth did I not do this months ago, or even last year? Heaven knows I've thought about it enough.

To be clear, my doctors's treatment of my hypothyroidism has been by the book and perfectly acceptable.  I don't have any complaints regarding her level of knowledge or competency. She also promptly referred me to an endocrinologist when asked, as she ought to have done according to the treatment guidelines from the British Thyroid Association for hypothyroidism.  So that's all fine.

My issue with her has been that I've often found her difficult to talk to (she interrupts, pulls faces and gets agitated) and also that she bizarrely sent me for an HIV Test when I didn't need one and she didn't bother to tell me she was doing it, which upset me. The whole HIV Test thing has brought things to a head. This is what I've been holding back sharing.

A June 2013 hospital blood test  showed that I had become anemic (due to my heavy periods) and it also showed a low white blood cell count. Due to a mix up with communications at my GPs surgery, my GP got the impression I was very worried about this white blood cell result.  In fact I wasn't at all - because no-one had indicated to me that there was any need to be worried, so why would I be?  But I called the surgery several times because I was expecting some advice, or an iron prescription, regarding the anemia, our messages to each other got lost in translation as the surgery message handling system is not very robust, so she decided I was worried. 

She therefore decided it was appropriate to send me for an HIV test - but she didn't tell me. I wouldn't even have known I was having the test if I hadn't asked the nurse what tests she was doing when she was about to draw my blood.  When she answered my question "full blood count [fine] and HIV Combo" [whaaaat? not fine!!!], I nearly fell off my chair. I had never considered HIV infection could be a possibility  it seemed that my doctor did think it could be, this was a total bombshell. Subsequent discussions revealed the test was not in any way appropriate or needed and I declined to have it.  There's nothing in my symptoms or lifestyle to indicate HIV could be an issue.  When I spoke to the doctor she said that the white blood cell count will probably right itself but that if it didn't it could be worth doing an HIV test as "that is the only viral cause of an ongoing low white blood cell count" (which indicates to me there may be other non viral causes but we didn't talk about this in more detail, who knows!) Funnily enough follow up tests of the white blood cells have been fine. She was just so bloody insensitive about the whole thing. Like I wouldn't want to have something like that explained to  me before just being given a test like that. 

I asked the Terence Higgins Trust if they thought it was reasonable for me to be referred for an HIV Test with no prior discussion. they said it was not reasonable, in fact my doctor, in their opinion,  had acted in a way which was unethical, insensitive and cavalier. I spoke to someone at NHS England for further advice, they said they agreed with THT.   Both organisations commented that it sounded like a waste of NHS resources as well, to run such an uncalled for test. 

So I complained. About the test, the communications mix ups and about the fact that she is often very difficult to talk to, making consultations more stressful than they ought to be. I'm glad I raised the issues. However it was stressful to do and I have not got the outcome I wanted - an improved relationship with her and an apology for the HIV test referral. 

I have at least achieved clarity,  I know now that I want another doctor. I tried everything to resolve things  and it became clear that my doctor is not going to change her behaviour or her attitude and that the way she behaves and her attitude are not what I want. 

I'm fairly appalled by how convoluted the NHS complaints procedure appears to be.  

First of all when I spoke to my doctor about my concerns she got in a total flap and insisted I put them in writing. When I did so I was promptly told the relationship had broken down (which I ddn't agree with) and told that the only way to have a discussion about it was through a formal mediation process which I reluctantly agreed to as I wanted to have the conversation. It then took ten weeks for that mediation meeting to happen and when it did happen it was just really stressful. The local complaints manager at NHS England basically told me that because my complaint had progressed to mediation with the surgery the only way to escalate it was to go all the way to the Parliamentary and Health Service Ombudsman. The mediation man told me that would likely be a tortuous experience which is unlikely to yield anything very useful and that I might want to put my own wellbeing first rather than going down that route. Indeed I do. I've been exhausted since the mediation meeting. It was stressful. Stress is not good for me. In the scheme of things this is a small matter and not something I want to waste a lot of energy pursuing. Frankly I just want my complaint noted and to move on.  But there's no point it only being noted at my GPs surgery because they've made it clear they just don't agree with me. Who is my GP accountable to?

Since the big restructure of the NHS earlier this year it's hard to work that out. PCTs don't exist anymore. PALs (Patient Advice and Liaison) Teams don't exist anymore. the Clinical Commissioning Groups who I thought were running the whole thing now are not involved in primary care, which instead comes under NHS England (a separate organisation). But... after  many enquiries, It turns out that there is a team of people within the Medical Directorate of each region at NHS England who are responsible for GP performance management. And I have now got the details to write to them. In fact I have the name and address of the Medical Director himself. It seems that, under this convoluted new structure, this team never get to see a lot of information relating to patient complaints but I'm told they'll be interested to see this and it might get as far as being included in my GPs next performance appraisal.  That's all I want. Someone who has some authority over her, telling her what I'm telling her, so that she has to take it seriously.  When the NICE Guidelines say that a patient has a right to give informed consent or decline an HIV test, that means you can't just organise that test and say nothing to them about it. 

I've also discovered that there is a facility on NHS Choices website where patients can post and read reviews of GP surgeries. Check it out (click the link above), if your doctor is good why not leave them a nice review, you never know when someone else might be seeking some reassurance about a surgery before registering with them. You could help. Likewise, it's worth sharing negative experiences to help people make their minds up about whether or not to give a particular surgery a go.  I've just posted a review on there about the doctor I'm leaving. It's interesting to read both reviews from patients and responses from practice managers. I think if I'd seen this before I registered with that doctor I would have gone elsewhere.  So hurrah for increased transparency.

I've also done a write up of the issues I've had for Patient Opinion.  This website aims to share feedback with the people responsible in the relevant bits of the NHS. 

I realise I'm in danger of looking a little bit obsessed and like I have too much time on my hands.  Ah well. I do probably have too much time on my hands at the moment and good patient care is something I am very passionate about. Having reached what has been a massive decision to move doctors I am determined that by hook or by crook my feedback will be heard and I hope that it can do some good. Perhaps at some stage my doctor will actually reflect on her behaviour and consider how she could do things differently. At the very least perhaps someone else will avoid going through what I went through because they will read my story and avoid that surgery.. 

According to the GMC guidance on good medical practice doctors must be polite and considerate and treat patients with dignity, allowing them to be partners in their care, they must listen to patients and take account of their views, they must be considerate sensitive and responsive. As I don't accept that referring me for this test without so much as a by your leave - and telling me that the relationship has broken down as soon as I protest -  is in line with these requirements, I'm just really cross. 

So that's that. The new surgery seem great. Let's see how I get on. It's so important to have a good relationship with a doctor when dealing with chronic health issues. Wish me luck. 

Never Give Up - Thyroid patients London meeting, Feb 9th 2013

So I woke up late, precisely 20 minutes after I was supposed to be on my train on the way to London for our event. And there’s only one train an hour. Yikes.  Fortunately I’d been aiming to be there very early, so I still got there before kick-off, just.

the pretty Kent countryside, seen from my train, 9th Feb 2013

My wonderful fellow volunteers had everything under control when I arrived. I am so lucky to have found such an amazing bunch of people to help run the BTF London Team. I always get a bit worried beforehand because I’m never sure how many other volunteers I’ll have but so far it has always worked out perfectly, we don’t always have the same people on the Team, as some have to reduce their involvement due to health or other commitments from time to time, which is totally fair enough, but other people always seem to come forward and lend a hand. I love the Team. They are all amazing.  I do worry though that the group is such a fragile thing, held together purely by our collective good will.

We had 76 attendees confirmed so there was quite a bit to do, setting out the literature,  putting up signs, registering everyone who arrived, manning the information table, testing the A/V set up, etc. Fortunately the Royal Free catering team were taking care of our refreshments. Doing drinks for so many people at these events would just be too much for us to handle ourselves so we bite the bullet each time and pay for catering on arrival and in the break, counting on donations to cover the cost. 

 

Professor Colin Dayan arrived just after me, as did our other patient speaker. Phewwew. We started more or less on time and the next 3 hours flew by, seeming all to go very well.

I did a talk about my own experiences of psychological symptoms and managing my psychological wellbeing with thyroid disease then our other patient speaker did the same. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while.

Then Colin Dayan gave his talk which was excellent and well received, though it had a lot of graphs and data in it which were sometimes a little challenging to follow. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.

He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that research in this area is a global effort, with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients.

It seemed that his team have a particular interest in a subgroup of patients which initially I felt I belonged – hard to treat hypothyroid patients.

As far as I understood the data that was being presented, it seemed that there is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general.  Some of the questions researchers are asking are:

• Is this coincidental or somehow linked to thyroxine treatment?
• Could combination treatment (with T3 and T4 meds) be better for these patients?
•  Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?

The BTF London group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.  The applause his talk received was heartfelt.

Colin is seeking funding for more research. I don’t know how much he needs, it’s probably lots. As some of you know, in a previous life (oh, it seems so long ago now), I did some significant fundraising for cancer research. Maybe one of these days helping thyroid researchers get the funds they need to do more work in this area might be something I could do. To be honest though it seems like a daunting and not particularly appealing task. I know from my past experience just how expensive serious medical research can be. And fundraising really doesn't float my boat as much as doing other things does. Still, food for thought.

The other thing is, while I recognise the value and importance of work like this and I applaud those who do it, it seems to be just scratching the surface and I know how long it takes for medical research to deliver changes for patients. There are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.

For myself, I know that treatment with Vitamin D and subsequently changing my diet have been highly significant in my recovery. Everyone is different of course, what worked for me is not necessarily going to be helpful for someone else. But so few patients are steered to consider dietary changes or even tested for Vitamin D deficiency by their healthcare professionals. And so few are offered counselling or CBT, or if they’re offered it the potential benefits may not be explained properly and it can come across as if they’re being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a vast gap in proper medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections.

Equally, perhaps mainly because of stretched resources and cultural issues, the experience that so many patients seem to have of not being listened to and not having their experiences properly acknowledged, never mind effectively addressed, by their doctors,  was reported by attendees yesterday as being a huge factor affecting their psychological wellbeing while ill.

As another thyroid blogger (@hypo_man) put it to me on twitter the other day: 

“being denied treatment has impacted my psychological wellbeing. Self-doubt this has caused is unforgivable”

I know the new NHS Constitution is supposedly working towards a massive culture change in healthcare delivery in this country which sounds great and I believe needs to happen, but I have many misgivings about whether that whole agenda is actually just a smokescreen for government cuts. And anyway, the issue here is not just about the paternalistic and dismissive attitude that some doctors exhibit towards some patients, thereby making their situations worse not better in some cases - it’s actually about knowledge standards and consistency of care for patients who’s lives are being impacted to a ridiculous extent, in some cases over a very prolonged period of time.

It was interesting that Colin’s research measured only depression. Brain fog, which is entirely distinct and seems to be a major concern for almost every thyroid patient I talk to, didn't appear to have been considered at all.  I had very foggy brains for at least a year, but did not score on any measure of depression, because - amazingly - I was never actually depressed. 

So I feel a little sad after yesterday. Although thrilled the event went so well and feedback was so generally positive. And although I’m incredibly grateful for Colin’s work and to him for giving up his Saturday to come and talk to us and for being such a total super star, sharing so generously and answering so many questions so thoroughly and charmingly. He really was a great guy.

It just seems medical science is a long way from being able to make a very meaningful difference for thyroid patients who struggle and we simply have to continue fumbling in the dark, doing the best that we can, trying different things, thinking positively, keeping an open mind and being patient, for the foreseeable future. At least I can happily report that, for now at least, by doing all those things I seem to have recovered a good degree of physical and mental wellbeing. I can think clearly, I have lost weight, I can exercise, I feel good overall.  I celebrate that.

At least the good doctors will acknowledge that they don’t have all the answers and are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.

With thanks and good wishes to those good doctors I’m referring to and very special thanks to Professor Colin Dayan for yesterday.  Let’s never give up. 

Day 2 #NHBPM, Inspiring Quotes

We go Health are encouraging health bloggers to post every day in November.  Check out the hashtag #nhbpm on twitter to see how the campaign is buzzing along.

Today I've been prompted to write about an inspiring quote. What I'm actually going to do is share a few different quotes that inspire me and also share a few different sources of further inspirational words, so that if you like the philosophy these quotes come from, you can tap into it yourself. Follow your bliss.

Here's my first quote:

"If you change the way you look at things, the things you look at change." Wayne Dyer (via @innerdelight) 

This is so true, I know, especially through being ill that we cannot always control our lives, shit happens, sometimes and sometimes it's hard to deal with. I get a little cross with those relentless "positive thinkers" you come across sometimes who clearly have never had to deal with anything they can't control and can be so lacking in compassion or understanding for people they perceive as weak or defeatist, who may struggle with health issues or other difficulties. But I try not to let their ignorance get to me, if I have the energy and it feels important sometimes I'll engage them in a little light debate and try and to broaden their view of the world. Other times I've learned that just letting some comments go and not taking on responsibility for trying to change everything that's wrong in the world gives me more peace of mind and lets me focus on the stuff that matters more - and where I can make a difference.

But there's a grain of truth in what those people believe. When I look at my illness from a poor me perspective I feel bad, when I actively choose to look at the positive things it has brought me -new friends, wisdom, a calmer more balanced lifestyle, opportunities for creative expression and the chance to support others, a greater appreciation of the love and support I get from my adorable husband, a whole new level of knowledge of how my body works and how to take care of it.... well I start to feel better. In fact I can get a real happy little glow going.  Honestly!

Taking time each evening before I go to sleep to consciously count up all the things I have to be thankful for that day means I snuggle down with a happy smile on my face and drift off into a pleasant sleep. If I allowed my mind to fret and wrestle over the things that had not gone to plan, or issues from the past, or worries about the future, I know I would not feel so tranquil, I would probably not get sleep so easily or sleep so well, I might have different sorts of dreams.  If I don't sleep well the chances are I will feel bad the next day. Good quality rest is important for my wellbeing.

And I know too that allowing myself to get stressed and upset about stuff creates fatigue, it can even create pain in my body as I tense up physically around my tense and angry thoughts. There are times of course when I do get wound up and angsty. Observing myself, afterwards, I now recognise that when that happens the effect is very clear. Angry emotions = feelings of exhaustion later. I seem to be a sensitive soul. When I cultivate serenity, compassion, empathy and acceptance of reality, I feel better and I achieve more.

Every day in every way, my thoughts and the way I look at the world truly shape my reality. I am not in total control, far from it, but I am a conscious being and my consciousness is what I experience and I have choices around where I put my consciousness and what I do with it.

Here's another quote I find inspirational :

"observe yourself, do not judge yourself, that is the highest form of human intelligence" from Jivamukti (? - source uncertain)

I keep coming back to these words. there's something about observation without judgement, acknowledging reality, including the reality of difficult emotions or situations, that somehow can bring about transformation. I got into meditation a few years back. The art of sitting. There are lots of different meditation techniques you can use, the simplest just to sit and observe your breath flowing in and out of your body. It's extraordinary how that simple observation process, switching off the judgmental chatter that flows naturally through our brains, can leave people feeling refreshed and energised.

If you follow the link above and here to the meditation site I built for the group I used to help run in Camden there a few more nice quotes and poems along the same lines as the one from Inner Delight and the Jivamukti one.

Here's a final quote I love and hope you will like too:

"Don't find time for wellness. If you value yourself, MAKE time to move and breathe and feel alive." @soulseedz 

Gorgeous, never a truer word spoken, what an inspiring world we are lucky enough to habitate, so many wonderful people sharing so many beautiful words and ideas we can benefit from.

With love and light.

I hope today's posting  has been worth your while to read. I'm very grateful for you stopping by. I'd love to know what quotes you find inspiring, feel free to share any below, or let me know if you are also writing on this topic for #NHBPM. I'd love to discover your blog if I don't know it already.

Thank you for for being there.