'It's all we've got' he says.

Why is it that there seem to be so few doctors who will a) look at the whole picture b) enable patients to try treatments other than those which they (the doctors) specifically agree with ?

These questions and others are the result of the first appointment I have had with my GP for eight months.

As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.

In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.

Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.

I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.

Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc..
All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year.
I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.

'It's all we've got' he says.

It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.

The last six months have been a total wash out. I'm nearly as far back as I was eight years ago.
Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.

Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right


In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.

Despair and anger

Sometimes I despair of humankind and how we deal with each other and look out for each other. It's always been the same. I've always felt like this --- even as a child. Now I'm a 'grown up' my despair has broadened when I see how we attempt to care for each other through the various services that we have set up as a society --- the NHS, Social Services, Education, Mental Health, Crime and Policing. I despair, not because I think the people 'on the ground' --- who do the actual face-to-face work, are inept but because all the well meaning procedures, paperwork and planning gets in the way of proper, responsive, person-to-person caring.

In the last few days there have been incredible, painful, stories about the attempts of local and national services to provide care for vulnerable children. They have been found severely lacking (an understatement). If common sense had been allowed to prevail a child might be alive today and being cared for by people who are capable of such love and nurturing

In the last few days I have met a friend who's mother has terminal cancer. My friend is beside herself because she is bringing up two children alone and lives 40 miles from her mother. She has tried and tried to access services to support her mother as she dies and found no help at all -- not from Social Services, not from the GP, not from Macmillan. No one seems interested in offering this dying woman the support she needs just in terms of personal care and help with the domestic routine. Apparently her mother doesn't fit into the right boxes. She slips between the 'safety net' of Services. Last week my friend and her brother were so desperate that they resorted to taking their mother to Casualty and begging for help. None was forthcoming.

When my own father was declining into that troubled ocean called Alzheimer's he only got some of the help he needed because I had worked within such Services and knew where to go, who to ask. He only got other help because my partner works in a similar area of work and knows how to use the system. When my mother was dying of cancer she only got what she needed because my partner and I worked tirelessly and doggedly to get her the help she needed. We begged and harassed and became a bloody nuisance until people responded. It shouldn't have to be like that.

In the last few days, the parent of a child in one of my children's class has been convicted. That child's family live on the 'wrong side of town'. They are a loving family but vulnerable -- very vulnerable. They were always vulnerable ---- even before this latest event. They are not bad people. They are troubled, unwell, uneducated, lost. The parent who is now left alone is incapable of managing alone for a whole variety of reasons. The Court made it clear that imprisonment would make things worse for the family but they convicted anyway and now they have moved that convicted parent to an Institution 60 miles away to a place where access via public transport is very difficult. There appears to be no support from Social Services and none from the mental health team. If appropriate support had been put in place before the 'incident' occurred that parent may never have reached a point where they would be involved in a criminal action. The family and the extended family is in disarray. They are falling apart and everyone knows about the whole sorry business because it was reported in detail with addresses and names in the local paper.

In the last few days our elderly neighbour fell and broke his pelvis. He had been having terrible pains in his spine and other joints but our doctor (for we share the same GP) had decided these were just to do with 'old age' and declined to do any tests. It now turns out our neighbour has osteoporosis which explains his pain prior to the fall and also explains, in part, why the break was so severe. Our GP could have investigated the neighbour's pain more conscientiously. He could have prescribed medication to prevent further deterioration (this has been going on for 3 years) but he declined to do so. There wasn't time and it's easier to put everything down to old age. If the GP had known about the osteoporosis he could have put in various aids about the house so my neighbour was less prone to falling...but he didn't. Now the neighbour's in hospital and the nursing staff are regularly forgetting to give him/help him with his hearing aid and so have resorted to shouting at him or getting cross when he doesn't seem to respond to their questions or requests. They've been telling him he'll have to wait when he needs the lavatory. They are overworked and understaffed. So far he has had two 'accidents' and is ashamed and embarrassed. It's nothing new. When I worked in a hospital for people with learning disabilities over 25 years ago it was well known that a certain member of staff would deliberately leave one old lady in her wheelchair right near the entrance to the lavatory but pretend to not hear her cries for help in getting to the loo.....so she would wet herself and he could come over and shout at her. He could have the power and enjoy her humiliation. Everyone knew. We just needed him to be caught....and he was......just desserts. But where does that kind of cruelty come from ?

I have no answers for all this. I only feel despair and anger: despair and anger at individuals within these Services who seem either to work without compassion and should never have been employed or are made to work to strict guidelines and procedures which don't allow for or recognize common sense and gut feeling.

Procedures, procedures....always the paperwork, the forms, the meetings and the middle management --- never the common sense. There are people at the 'coalface' who see the families, see the children, see the old people and their despair and pain and needs and KNOW how to respond because the relationship is based upon one human being to another without the wall of bureaucracy and the constant reflection back to budgets, timescales, productivity, certificates and more bits of bloody paper. Most people in the 'caring professions' are there because, by nature, they care. They are blessed with an innate ability to respond to others' needs and know what they have to do. If their voice was heard and they were allowed to act upon their common sense, I am convinced that lives would be happier, that lives could even be saved.