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. 

2010, a year to forget?

I finished work on 23^rd December. What a joy. It’s weird to think I won’t be going back there but mainly just a huge relief not to have to deal with the pressure of it anymore. My adorable husband has been on holiday too so we’ve been relaxing together.  Lots of telly and eating and sleeping and little gentle walks most days.  

I realised that I half expected to stop feeling unwell when I didn’t have to go to work anymore.  Well  that hasn’t happened,  I’ve been pretty tired most of the time, to be fair I’ve had the traditional Christmas chest infection which won’t have been helping. I’ve also become more aware of some weird instances of brain fog.

Brain fog is a recognised symptom of hypothyroidism, it can also be a symptom of fatigue, stress, depression, dementia, all sorts of things. I have a dear friend who’s mother got Alzheimers when she was only in her 30s but that’s extremely rare. I’m thinking my fog is a combination of my thyroid issues and the Adrenal Fatigue my new doctor says I also have.  It is a little scary though, it’s hard to judge how bad it is and I have no way of knowing whether it will get worse or better. I choose to work on the assumption it will improve, meanwhile it’s just something else to deal with.

We went out for tea and cakes with some friends and when we left I picked up my coat from the back of the chair I’d been sitting on and asked who it belonged to, like I’d never seen it before in my life! I totally didn’t recognise it at all! That was embarrassing.

Then we went to visit some cousins on Boxing Day, they’d invited us and I’d forgotten the invitation, then I half remembered it and called them to find out what we’d agreed and they reminded me, so we went. Then when we arrived they were surprised we weren’t staying overnight, because that’s what we’d discussed, only I had no recollection of the conversation! That was embarrassing too.

My cousins were clearly a bit shocked at my addled brains and made a point of saying how it wasn’t like me - to not be on the ball. So then of course I got upset, I felt a bit shocked to think my brain is functioning so much more poorly than I’d realised and that other people can really tell, more embarrassment! They’re lovely so it didn’t matter. If you can’t have a little boo with family at Christmas, when can you.  My cousin said when we left that it was good that it had happened because if it hadn’t they wouldn’t have known how much this illness is affecting me and he was all hugs and loveliness.

It made me wonder how much of a nightmare I might have been being at work.  The thing is it was such a stressful environment there that everyone was always forgetting things or getting them slightly mixed up, so when I forgot stuff I just put it down to general blur of having too much to do and too much to think about and I didn’t take it that seriously.  Maybe I was much worse there than I appreciated. No way of knowing. Well now I’m out of there, time will tell how much of the whole thing might be simply stress related.  

I don’t like to think of myself as affected by stress because my whole life I’ve had lots of stress to deal with and I’ve always been very good at handling it. I am known to be good in a crisis. I’m also very loath to let myself be labelled as someone unable to handle stress, it doesn’t ring true and I much prefer to think of myself as powerful and in control.

I like to think that my strength of will is all I need to achieve whatever I want to achieve - and up until now in life that approach has served me pretty well. This whole thyroid business is thoroughly weird and can be hard to come to terms with.

I won’t forget 2010 in a hurry though. Lots has happened, it’s all been fascinating, I’ve learned a lot and 2011 beckons just around the corner, brimful of possibilities.

I’d love to hear your experiences of being forgetful and what impact forgetfulness might have had on your life.....or what key memories or lessons from 2010 you will be carrying forward into to the new year....

Thanks so much for reading, it means the world.

Hope