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7 August 2011 On Saturday 5 Aug I visited my New Forest nephew and he has said he’ll help me raise awareness of post-traumatic hypopituitarism (PTHP). He had good ideas, eg to approach viagra websites, so we tried a few and I’ve already had a promise from one to include something on head injury in their FAQs. I would never have thought of this on my own. He also thought cycle helmet manufacturers might include something on the information that goes in the box - as he said, quite a few customers buy new helmets because they’ve had a head injury and wrecked their old one. Another idea was to approach priests because they counsel people with problems. It’s so good to have a fresh approach. So, apart from a couple of Viagra emails over the weekend I’ve emailed Dr David Delvin on Netdoctor, asking if he’d change his ED article. That would make a big difference. My plan for the next few weeks is to focus on ED, as well as carrying on the existing threads of the BBC Health website and the head injury / suicide figures. But I won’t have all that much free time (because of childminding), just 2 days a week and a few evenings. Still, the important thing is to keep things ticking over and hope my nephew gets keen and puts some time in. I emptied out the telephone-kiosk-shaped money-box today and it had £15.80 of road-kill in it, and 2 euros, plus a heap of unidentifiable foreign change. 11 September 2011 A long time since last time and not much done. The BBC still haven’t put anything on their website though they are always prompt in replying to me with a reason. The latest promise is that the revised version will be back from the GP next week. Surgery Door changed their ED entry on their website - not entirely to my satisfaction but this was my fault as I failed to back up with research my statement that hypopituitarism could have late onset - but it’s better than it was before, and I have sent them the research now so maybe they’ll include it. The Sexual Advice Agency have also made some changes. They put ‘occasionally, severe head injury . .’ which was not at all what the research I sent them indicated, and now in response to my expostulations they have promised to omit the word ‘severe.’ I keep checking but they haven’t done this yet. Netdoctor have still not responded to my request, received and acknowledged 17 August. Patient UK have changed their ED entry exactly as the research I sent them indicated. This admirable website stands out as having integrity, and no agenda except to give the doctor and patient the information that they need, accurately and accessibly. Hurray that they exist. The Brain Injury Rehabilitation Trust updated their leaflet about sexual problems way back in June, but have still not printed it and still not changed the version on their website. However a reminder from me this week prompted the reply “I will find out but as far as I am aware it is with the printers and once printed a pdf will be put on the website. Should be any time now.” Also mentioned the possibility of introducing a pro forma for medical tests on admission to their services, which means they could specify endocrine function tests. It’s hard to fit in head injury things with childminding. There are so many things I should do and I don’t, not just because of shortage of time, but because I waste it and dither. PS I wrote a letter to the New Scientist who this week have an article about mild head injury and how it can cause early-onset Alzheimers. My letter of course points out that it can cause hypopituitarism too. I have bet John £1 that they won’t publish it. 14 September 2011 The BBC have actually made some changes to their health website! I’m giving myself a few days to think about whether they include everything they should. 15 September 2011 I’ve had time to look now, and think they have done well on the Head Injury and Depression pages, though I still have some reservations about their Erectile Dysfunction entry, and would like them to make some changes to Infertility and Chronic Fatigue. But anyway, I’m glad I made a fuss about the Action Line, all those months ago, because the changes are well worth it. 20 September 2011 The New Scientist didn’t publish my letter, as I expected, and John gave me my pound. The information I sent them was relevant to their article, important, and with the potential to help a substantial fraction of their readership (if you count not just the head-injured but their relatives and friends, as of course you should). I wonder on what grounds they would justify rejecting it if I asked them? The BBC Health website responded to my letter asking for further changes, so I have to say I am now perfectly satisfied with their entries. The Sexual Advice Association have also made further changes (omitting the word ‘severe’ and making other changes too) so all credit to them as well. |Nothing from Netdoctor despite a prod. I wrote to the Mayo Clinic. Also to my MP again. The MoD have responded to all my, and his, questions so there is no further reason for delay. 25 September 2011 It’s Chris’s birthday today. He would have been 35. We went up to Yorkshire yesterday setting off at 5am and arrived at Otley in time to meet 3 of his friends and go for a walk with them. We walked around the Chevin - a blowy day, with lovely views - and part of it was through woods, where the leaves are starting to come down. This is his part of the world, where he chose to live, and where I visited him during the last five years of his life, and just being there fills me with useless sadness. 26 September 2011 Last night I wrote to the NetDoctor Doctor’s wife again (poor her, being pig-in-the-middle, I think she is a nice woman) listing all the other websites that mention head injury as a cause of erectile dysfunction. I have a good list now: BBC, BUPA, Patient UK, Sexual Advice Association, Headway, Surgery Door, CKS. What would someone think, who had visited these other sites already, if they came to NetDoctor and found not only no reference to head injury, but a dismissal of hormonal causes as rare? Would they not lose confidence in Netdoctor . . ? This made me feel better. And then I wrote to BIRT saying their two years of dispiriting delay had made me suspect that they considered the plight of people like Christopher of minor importance, and asking them to prove me wrong. If I could have thought of anyone else to write a sharp letter to I would have, but I was tired and went to bed. Today is my one free day and I am using it to catch up and tidy up. 7 October 2011 The NetDoctor email yielded no response, so I have to abandon that now. Writing to BIRT did result, perhaps coincidentally, in the new sex leaflet appearing on their website on this link http://www.birt.co.uk/images/BIRT_2011_Sexuality.pdf so all credit to them. I spent Sunday forgoing a walk with our group in the miraculous Indian summer weather (healthy exercise, pub lunch, camaraderie) in favour of sitting at my computer all day writing to the State of Mind campaign - a campaign set up after Terry Newton’s suicide to tackle mental health among rugby players. I emailed all the panel members I could find listed on their website, and had a nice warm response from one of them (a woman, naturally) followed swiftly by an email from Ernie Benbow, the main organiser, not addressed to me but to this woman, copying me in. It said “This lady has sent an email to everyone associated with State of Mind . . I have advised caution in replying to these types of emails as we have no evidence about the validity of the individual and or the company she represents. This is a matter for further discussion by the Programme Board about responses to such emails. We need to display caution and vigilance. . .I have fielded other such requests recently from people who are simply peddling a commercial interest.” I later, having established my credentials, received a stiff semi-apology from him, followed by another email saying “Mrs lane For the purpose of a forthcoming meeting and to ensure i report accurately could you please tell me how you have acquired my email address and those of my colleagues?” So I replied that if he googled himself he would see that it was quite easy, and sent him a sample link. I also reminded him that we were on the same side: “We both want these young men to stop committing suicide and my information may help.” But nothing from him until, yesterday, a formal refusal to do what I asked, which was to post information about head injury on the State of Mind website and to include it in education sessions for Super League and amateur clubs. I despair. What is the use of setting up a group to stop suicide if you are silent about what is likely to be a major cause? Why should he be so hostile? What is the matter with him? However one good effect was that Mike Farrar the national Tsar for Sport, who is on the panel, responded saying my information was important and he had passed it on to the clinicians setting up the National Centre for Excellence in Sport and Exercise Medicine (he hoped to make an announcement later this autumn) and would ensure they ‘factored it into their thinking.’ Fingers crossed that nothing happens to prevent this. 20 November 2011 Again a long time since I wrote. Looking back over my emails I see I didn’t manage to do much, and nothing much came of what I did do. I tried to persuade AvMA, the ‘charity for patient safety and justice’ to tackle NICE about their failure to warn the head injured patient in the hospital discharge advice note.
As expected, I received no answer to this - I actually felt it was unanswerable - and after nearly a fortnight I wrote a follow up, and got a ‘bear with us, we’re very busy’ reply. I don’t know how long to leave it. What else? I wrote to someone high up at the Royal College of Nursing who has been promising since June 2010 to write an article for their publication (I don’t know its name) about PTHP. I have reminded her so many times, and sent so many references - even practically written it for her - but all I get are more promises which I suspect are quite empty. Maybe I should approach someone else at the RCN. I’ve also been corresponding (fruitlessly of course) with my MP. I am going to post this correspondence on a separate page. Oddly I find that the NICE correspondence, which I would have thought was terminally dry, is the most visited page on this website, so maybe it will be the same with my parliamentary dialogue. I wrote to the Guardian, where I have two contacts, saying “Thousands kept in the dark about a treatable condition - surely this is a story?” but just got passed on to Denis Campbell, who never replied, despite my writing twice more. I noticed that the BBC Health page on childhood head injury still had no mention of PTHP and wrote, and this at least has been amended. One other good exception to this gloomy list is that my AvMA correspondent sent me a copy of an article by Carol Jackson and Michael Barnes which has just appeared in a legal journal. This tells you everything about PTHP except that it may have delayed onset, and that children may grow normally and still be growth-hormone-deficient. Apart from these omissions it’s a good article and should alert most personal injury lawyers. http://www.pannone.com/media/articles/personal-injury/pituitary-problems-after-brain-injury One of my most disappointing failures was to persuade an endocrinologist to write an article for a legal publication - I felt that once the personal injury lawyers started ensuring their clients got treated things would start happening. So maybe they will now. Also Prof Barnes addressed the World Congress of Neurology in Marrakesh on PTHP last week and emailed me saying it seemed to go well and that several neurologists came up to him afterwards saying it had never occurred to them about hypopit as a cause for erectile dysfunction, tiredness etc. I went to the UKABIF annual conference ten days ago and actually met Carol Jackson, who said she wrote the article because she’d heard me speak. I made a few more contacts there, but don’t think any of them will come to anything. Like most people I’ve had a bad cold / cough that has gone on and on, which may account for the low mood. But this weekend John and I went on a couple of country walks in the autumn sunshine with our walking group, which made me feel better. What I like most are the pub lunch-stops. Yesterday one of our co-walkers, a lovely zestful girl, gave us a glimpse of two huge breasts as she stooped to sit on the bench opposite, remarking that the pub was emptier than she expected. What she actually said was ‘They’re not very full today,” and what John thought, as he told me later, was “Oh yes they are.” 18th January 2012 So, the Christmas holiday is over. I had two weeks off from childminding my granddaughter but hardly got anything done, partly because I felt ill and tired with my cough. It must have gone on for more than 3 months now. After getting Alastair Campbell’s advice I did at least finish my 32 letters to the MPs on the Mental Health All Party Parliamentary Group and the Health Select Committee. Researching them I thought there must be one of them, surely, who would take PTHP seriously. There are three qualified doctors - Baroness Murphy, Dr Daniel Poulter and Dr Sarah Wollaston - who I have hopes of. I also thought Guy Opperman and Jon Cruddas sounded energetic and principled. And there’s Dame Anne Begg, who has Gauchers disease and probably suffers terribly with it (but I can hardly believe she would have any energy and strength to spare from all the other things she does.) 28th January 2012 Well, answers from the MPs have started to dribble in, five so far. I think it was worth writing to them as I discovered that one MP was already aware of PTHP and ‘shares my concerns’ about the under-diagnosis and is happy to raise it with the MHAPPG. I went to the Oliver Zangwill Centre on 25th to a free conference celebrating their 15th year. I thought it was lovely of them to let me come, and I was glad I made the 2 hour drive there because I met a personal injury lawyer with whom I’d corresponded in 2009, who told me that she has referred 50 of her clients to their GP for endocrine checks and not one of them has been diagnosed with PTHP, even though you would expect about 10 or more among that number. She thinks the GPs don’t know the right tests to give, when to give them, or how to interpret the results, and I agree with her, going by the experiences of two people with HP that I’ve had correspondence with. They both tried for several years (8 years in one case, 3 in the other) to find out what was wrong with them, got no help from their GP, were treated as if their symptoms were psychosomatic, spent thousands of pounds privately visiting various specialists, and eventually achieved diagnosis by, in one case, getting considerable help unofficially from a retired endocrinologist and in the other by the good luck of being referred to a cognitive behavioural therapist who thought outside the box and realised something organic was wrong and suggested this person should look at the Headway website - which had information about hypopituitarism on it. How very bad it is that the Royal College of GPs has done nothing (despite my approaches to them) to inform GPs about this - how cruel and callous that patients should have to suffer so long and spend so much on finding diagnosis. And the ones I’ve mentioned only managed it because they had the funds to keep looking. And they are the lucky ones, the 4% who get diagnosed. (Actually, one of them not so lucky - she died of a perforated bowel last year, surely partly because her body’s ability to fight had been undermined by being starved for so long of the hormones it needed.) The other thing I discovered is that SIGN, the Scottish equivalent of NICE, are producing a guideline on rehabilitation after head injury which is due out later this year, and which apparently doesn’t mention hypopituitarism. I have written to them asking them to confirm this. The last presentation at Oliver Zangwill was made by Mr Tim Lodge, who had had a minor head injury which had devastating consequences on his mood, memory and mental function. It turned out that he had pituitary damage. He had been rehabilitated at OZC and made a good enough recovery to go back to his job in engineering design, and to be the ‘old daddy’ that his younger daughter pined for (‘When am I going to get my old daddy back?’). He did not mention receiving replacement hormones but I confirmed with the director that he had had it, and I guess that it helped his recovery considerably.
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