Our son Chris has been dead for 2 years, 8 months, 11 days. I shall be 63 tomorrow and I’m taking stock.
The story so far: after Chris’s suicide at age 31 we quickly discovered some key facts. He’d been impotent as well as depressed - all his life apparently. He’d told his counsellor he didn’t ‘feel like a proper man,’ though he didn’t say why. It seemed likely he killed himself because his friends and cousins were all getting married and having children and he saw just loneliness ahead. He probably felt no girl would stay with a man with erectile dysfunction.
Secondly, we found all this was probably caused by his head injury when he was 7 (see research on this website). Pituitary damage after head injury can make you impotent, infertile and depressed.
But nobody seemed to know about it! Study after study described the condition as under-diagnosed and there was a strange silence on NHSDirect and in NICE’s head injury guideline.
It didn’t take me long to realise there must be others, maybe thousands, suffering in the same way. When tragedy strikes you have a surge of anguished energy which has to find an outlet. I decided to use mine to rescue these people - because hypopituitarism is treatable! Hormone therapy could have saved Chris.
So in September 2008 I started a long quest to tell everyone - politicians, doctors, psychiatrists, counsellors, charities for head injuries, depression, sexual problems, and the general public.
I was cautious. I didn’t want to be guilty, ironically, of letting down our two daughters by ignoring their needs by concentrating on atoning for letting down our son, so I always tried to put them and my husband, and my grandchild, first. What I’ve done has been in the crannies of left-over time. But I’ve never given up. Now I’ve been doing it long enough to see that it’ll take me the rest of my life.
15 May 2011
Today I’m feeling cross with myself because I have wasted a very good chance to publicize post-traumatic hypopituitarism (PTHP from now on). Last year I wrote to a well known scriptwriter, and to my amazed delight she said she would highlight PTHP in a Holby City episode. This is coming up next Tuesday (‘Step on up’ Holby City episode 31 series 13) - please watch it! Now this is good in itself because the audience is 5 million plus, but I wanted to get something in the national press on the back of it and I’ve failed. All I have are two articles in the local papers for where I live in Coulsdon, and where Chris lived in Skipton. If only I could have got something in the Daily Mail!
Also the BBC will usually put an ‘if you or someone you know has been affected by the issues in this programme’ tag at the end, with a list on their website of helplines to ring, and I have missed the boat with this too.
Well, I just have to learn from this and do better next time, if there is a next time.
This evening I wrote to the ex-newsreader Sheena McDonald’s husband asking for their support. Sheena M had a horrific head injury in 1999 and afterwards her weight increased, which can be a symptom of pituitary damage. It would be wonderful if they’d raise awareness.
16 May 2011
I started the day by swimming 20 lengths and sawing down 2 big ash saplings in the garden, which made me feel mighty. Then I tried to make the BBC change its mind about the ‘if someone you know has been affected’ website entry. But I failed. Then I settled down to a sustained last-ditch attempt to get a story into the media, following advice from my virtual (and virtuous) friend, a journalist who has acromegaly. This is a nasty pituitary condition which often incapacitates him, but even though he felt bad today he still helped me, and made me a list of places to try, which I worked through. I think, touch wood, that I’ve had some successes but I’m not going to write anything here until they’re in the bag.
Birthday-wise I’ve had a bag of cashew-nuts and 2 bounty bars from my husband as an interim present, and phone-calls from our two daughters. (We had a nice lunch out yesterday).
17 May 2011
Well, I’ve done one of my media things - a phone interview on BBC Radio London at a quarter to 8 this morning. It was only 3 minutes, and although I was clutching a prompt with the points I wanted to get in, I failed to say what the symptoms could be, how it could get caused by mild injury, that the onset could be delayed, and that it was treatable! Moral: have large stopwatch ticking down so not caught by surprise when time is up. However I was not as scared as I thought I’d be.
The other good news is that a friend managed to get something in the Sun for me - a small box in the very middle of the centrefold headed HOLBY PAIN. This is excellent as the circulation is over 7 million.
I’m still thinking about the refusal to put ‘Information and Support’ for hypopituitarism sufferers on the BBC website. The dialogue with Ian Johnson Publicity went like this:
Me: “Can’t you refer them to the charities Headway and the Pituitary Foundation?
Them: "The BBC aren't allowed to endorse charities."
Me: “But they do it after lots of other programmes, with a disclaimer that they aren't responsible for the content of external websites.”
Them: “That's only after factual programmes."
Me: “What about Eastenders, after the baby swap episode? That was a drama and they named charities then.”
Them: "Well, the producer's said No and there's nothing I can do."
Afterwards I looked up some more - there’s a page called Action Line (www.bbc.co.uk/actionline/actionline.shtml with a whole lot of links to these support pages, and a lot of them are after drama, particularly Waterloo Road. There was no reason why Holby City shouldn’t do the same.
Just by chance last night in bed I happened to be reading ‘Empty Cradles.’ This is Margaret Humphreys’ account of how she uncovered the huge scandal of how British children were shipped over to Australia to boost the population there, often being told their parents were dead (untruly), and used as slave labour or sexually abused. Anyway, a dramatisation was made, very shocking and moving apparently, called ‘The Leaving of Liverpool’. Strangely, the BBC sat on the programme for a year, and then refused to do publicity for it, saying there was no funding for that or helplines. (Helplines were vital because a lot of traumatized people would be watching.) When Margaret herself organized publicity and found funding for helplines the BBC said they wouldn’t screen the numbers because it ‘wasn’t necessary’. It was only after questions were asked in the House of Commons with 2 MPs demanding an inquiry into the BBC’s refusal, that they finally caved in.
I wish I had that sort of clout.
Well, the other media breakthrough which I was afraid to talk about unless I jinxed it, got jinxed anyway. I was due to appear on BBC Breakfast tomorrow, but at 3pm they pulled it. Apparently they needed either the executive producer, the main storyline editor or the series producer of HC to appear with me, and one of them had chicken pox, one of them was on holiday in Wales, and one was somewhere else far away. And I’d got to the stage of having my hair done and telling people about it!
I just have to be content with Holby City itself (always assuming that doesn’t get pulled), Radio London and the Sun, and be glad I’ve made contacts I can use another time.
Holby City wasn’t pulled, I watched it and thought it was excellent. It has more than made up for other disappointments. In my campaign I’ve mostly concentrated on getting the facts out there, but Gillian Richmond’s script communicated the emotional things - the young man’s despair, his girlfriend’s feelings, their joy when they heard treatment was possible. It was beautifully done.
I started writing this blog because on the BBC’s page for Holby City it has a button saying ‘See the Buzz for Holby City’ and talks about a tool they have for trawling the net automatically for blogs mentioning it. I thought ‘here’s a good way to entice people to my website!’ - but it seems as if all the mentions are for programmes months ago.
I went out to the kitchen to make tea, and a metaphor came to me. When someone loses, say, an arm and suffers pain in the phantom limb, you can cure the pain by placing a mirror so that the reflection of the good arm gives the illusion that both arms are there, and then doing exercises. Somehow, seeing a young man who had just a bit of a look of Christopher, lying on the bed and being told good news, which is so much what I wish could have happened to our son, eased something inside me. Strange.
18 May 2011
I rang the BBC at 8am to ask what they would say if a young man rang for information after the Holby City episode. And the answer was, nothing helpful. I offered to send details of Headway and the Pituitary Foundation but they couldn’t hand these out without being authorized from above. The man said he’d log my call as a complaint and I would get an answer in the next 2 weeks. ‘But that’s not the point!’ I said. ‘It’ll be too late for those young men.’
Then I emailed the Brain Injury Rehabilitation Trust who have been very slow to put anything in their information leaflets about PTHP. It satisfied me to write ‘It’s possible that some of the 6 million viewers of Holby City may come to you for information, so now might be the time to update your leaflet about sexual problems.’
Then I proofread some leaflets being given out to child participants in a study in Bristol to see if head-injured children suffer hormone deficiencies and if there’s a tie-up with their subjective quality of life.
Then off to take granddaughter and co-granny to Messy Play which is enjoyed by the small but not so much by the large, owing to shortage of chairs, off which you’d have to leap anyway, frequently, to stop your protegee dowsing small babies with water etc.
I came back expecting an avalanche of emails and calls, but nothing except from a few friends. So I focused on Papyrus, the organisation for preventing young suicides, and emailed Ged Flynn and Anne Parry. No reply. I also wrote to Keith Hawton at the Oxford Centre for Suicide Research, who once sent me an article by Simpson and Tait that showed that head injury triples / quadruples suicide risk. I find it strange that he knows about this article, and is responsible for the National Suicide Prevention Strategy, yet the Strategy doesn’t include head injury survivors in its list of high risk groups. The list includes Asian women who also have a tripled risk. I’m looking at the 4 criteria which are:
Group must be shown to have statistically increased risk of suicide
Actual numbers of suicides in group must be known
Evidence must exist on which to base preventive measures
Ways to monitor impact of measures must exist
The first is satisfied. The second must be discoverable. If they know how many Asian housewives commit suicide they must be able to find out how many head injured people do too. Third - there’s evidence that replacing thyroid, growth, sex hormones increases wellbeing. And as for monitoring - well, just diagnose and treat people and see if the suicide rate goes down. So why aren’t they included?
I also wrote to Professor Gordon Turnbull, an eminent psychiatrist, to ask if psychiatrists now routinely ask if clients have had head injuries before prescribing counselling and anti-depressants. And also if they probe for sexual problems. The psychiatrist who saw Chris didn’t explore either area, and said he didn’t need medication, just counselling. If only he’d known about pituitary damage and sent him to an endocrinologist!
Now I need to move my body - too long in front of computer. Hoovering! Tile-cleaning!
In the end I moved my body by mowing the lawn. The corner for grass-clippings is near the stump of a tree Chris cut down for us in July 2008. Here is my poem about this which I wrote soon after he died.
In his last month of life, our son
Sawed down a tree for us, that stood
Blocking the sun.
Red sweating head, loose strength, dear hands, so good
He was my son, bone of my bone, of my flesh born,
Thirty years grown.
Good too the wood, close-grained, clean-scented,
He was the woodman and the wood
He was the sawyer and the sawn
He cut himself down.
I can’t write poetry. I couldn’t express how I loved the person who was killed, and the person who did the killing, because they were the same person. I thought my head would burst with it.
Now the sawn-off tree stump, which was ‘close-grained and clean-scented’ when he died, has weathered. The centre has gone dark, like a dark eye with paleness round it, and the bark is cracked. Around the stump is what looks like a rough straw nest - these are the lavender stalks that I trim off the bushes when flowering is over, and then wrap round protectively, like cuddling a duvet round a child.
On the anniversary of his death, at about 5am when I guess he died, I went out with bare feet, carrying a little tube in which I’d collected my tears, wept mostly at night. I collected them because they were so few. I didn’t seem able to cry any more, and when I did, the tears went into my sinuses. But I wanted to give him tears, not snot, so this inch or so of cloudy liquid in the tube was all there was. I poured it on to the stump and went back indoors, to bed.
That was August 2009. And now here I am in 2011.
There were two emails from the USA this evening, both of them informative about practice there, and developments in research, and surprisingly personal and kind, so that helped my feeling of being ignored. But I feel too tired to take them in. I’m going to bed now.
19 May 2011
Nothing from Ged Flynn or Anne Parry. Or Keith Hawton, or indeed anyone in the world. I had another chat with the BBC switchboard. They are all lovely educated young men with Irish accents (they’re in Belfast) who listen attentively, and I recommend inventing a complaint just for the pleasure of their conversation. The rest of the day I spent taking my grand-daughter and co-granny to a church playgroup and then going up to London for lunch with a friend. Then I had a master-class in making a pitch from my journalist friend. To bed now.
20 May 2011
I took our defunct microwave to the dump and went shopping, all before 9am. This enabled me to plunge into campaigning like a lion. First I made a pitch to a radio programme, as taught by my journalist friend. It worked! - at least, the person asked me to send what I’d said in email form and talked about finding some people with hypopituitarism to interview. I paced the house exultantly, not able to settle. Then I rang the MOD to ask how many head injured soldiers there are and whether they get screened. I said I was a freelance journalist, it sounded better than ‘housewife’. (Well I am, I’ve had stuff in the Guardian, Telegraph, Sunday Times.) First they said they’d try and get the info to me by the end of tomorrow. Then they changed and said I’d have to put in a FOI request (which takes 20 working days!). I replied ‘I think the inference is that the answer to the first question is ‘tens of thousands’ and the second is No.’ I’m sure the story will get killed somehow. Bet you 50p.
The Brain Injury Rehab Trust emailed back. ‘Hi Joanna, Although I have an aversion to Holby City/Casualty etc I did happen to catch that story line. I wondered whether you had been behind it? As you say I must/will get on with revising the Sexuality leaflet.’ So that was nice. I said ‘I would like you to make yourself a nice cup of coffee, settle yourself comfortably, and let words about sexual problems flow from your finger-tips, preferably today.’ I was afraid it might annoy him rather than make him laugh, but you have to try these different ways.
I got a useless answer to my BBC complaint, talking of ‘hyperpituitarism’ and refusing to tell me how many people had phoned about the programme. I wrote a letter to Myar Craig-Brown the producer, with a copy to Danny Cohen the BBC1 Controller asking MC-B to justify her refusal to provide contact numbers, and send me the criteria everyone must follow for including Info & Support on the Action Line page. Pat McBride from the Pituitary Foundation says the PF never gets a mention after any programme, which doesn’t surprise me, it just fits with the general governmental determination to starve pituitary sufferers of any information whatsoever that might lead to diagnosis.
Then I chased Papyrus but no luck. The CEO has been busy with interviews all week, and Anne Parry (bereaved mum) didn’t contact me either. I couldn’t get the Oxford suicide guru Keith Hawton’s secretary, or KH himself. Then I wrote to lovely Lee and Bob Woodruff in America. Bob had a terrible head injury in Afghanistan and lost part of his skull, but made a wonderful recovery by good medical care and pure will-power, and now they run the Bob Woodruff Foundation, a national non-profit to support injured soldiers and ReMIND.org which gives info about their needs. I call L and B lovely because I’ve just read their book ‘In an Instant’ which kept me riveted, horrified, heartstruck, amused, moved by turns. I do hope they answer. (Americans are much better emailers that Brits, they tend to reply in 4 hours!) I want examples of good practice in the USA. I already know from the emails on Wed that CNS in California and Texas screen for PTHP, and I believe US soldiers get screening too.
Sunday 22 May
Yesterday was just walking and talking and sleeping. We started from Haslemere and walked to Midhurst, doing 13 miles in all. Lovely sunny day and good company.
Today we visited friends in Richmond and I didn’t do much head injury stuff apart from emailing the Child Brain Injury Trust to see if their trustees had decided to support me in asking NICE to amend their head injury standard discharge advice to include a warning.
I also emailed a lawyer who was supportive after I talked at the CBIT conference in March, telling him about Holby City and asking whether they told their head injured clients about the PTHP risk.
I cooked chilli this evening. Normally I painstakingly cut up the onions by hand, with a knife, but I thought this time I’d be brave and use Christopher’s food processor, which we brought back from his house after his death. With strange symbolism, when we took it home, it had all its parts except the central upright pivot that you fit the chopping-blades etc on to. I ordered a new pivot straight away. I felt as if his possessions were all I had, and I had to make sure they were working and complete. I took his tee-shirts and washed them, and his scissors and sellotape and pens and labelled them all with his name so that I would use them and know they were his. There was some part of me that wanted to use them and use them until they were all gone, so that one by one I would throw away, say, the empty packet of cold remedies or the bare sellotape roll, and gradually say goodbye that way. I wore all his tee-shirts day after day - I still do, I’m wearing one now - but they haven’t dropped to bits yet.
The food processor made me very sad. It is a nice one which must have cost him a lot of money, he liked cooking, and he must have had plans and hopes. So I whirred the onions into mush (memo: do them in small batches next time) saying ‘Poor Christopher, poor Christopher, poor Christopher’ over and over again. This produced a few tears, and a lot of snot (see above).
Jill next door says she did that when her husband died of lung cancer. ‘Poor Tony, poor Tony, poor Tony.’ Perhaps everyone does.
Time to take the chilli out of the oven (it’s for next weekend and I’ll have to freeze it) and go to bed.
Wednesday 24 May 2011
This is my busy child-minding week when I can never get much campaigning done. The lawyer replied saying there had ‘been a lot of interest but no specific outcome’. In other words 2 months after my talk these personal injury lawyers are still not telling their clients about PTHP or getting them screened, and one has to ask why? I have asked him if he’ll have a chat with me, and he has kindly said yes, but not for a while. Perhaps I’ll find out what the obstacle is then.
Other good news is that the Royal College of Nursing are writing an article for their News Bulletin. This has dragged out since last June, with me patiently nagging every so often, but it really looks as if it might happen soon. Also the BIRT professor didn’t seem to mind being told to have a coffee and sit comfortably and revise his leaflet, because he’s done it! He said he did the coffee but not the sitting comfortably bit. I feel enormously pleased about this, because hopefully I’ll manage somehow to get these distributed to every hospital in the land.
Bank Holiday Monday 30 May 2011
A busy, fun weekend with 4 guests to stay. We walked around Hassocks on Sat, and along the coast near Goring on Sunday. Sunday evening we watched Tamara Drewe, which is a delight.
This is a quick update of my blog, which I won’t be able to revisit until next Tuesday evening at the earliest.
Summary of 25-30 May: I put in an FOI on how many suicides had a previous head injury. Nancy at the Woodruffs’ organisation replied nicely, saying she would ask veterans whether they were being screened. The Child Brain Injury Trust said they were happy to support me in pushing for the national head injury discharge advice to be amended. BIRT said they’d consult about ditto. I also approached the Royal College of Nursing, and ‘Brain and Spine’, on the same issue. Reminded Mr Belli about the article he promised solemnly to produce by the end of May. Discovered Papyrus were very busy interviewing staff for their new quarters in Warrington - realised I’d have to stand back until they’ve got themselves settled . Wrote to an American TBI website - NVF - which Prof Turnbull told me about.
Today Prof K Hawton replied at last, saying there wasn’t enough research on suicide and head injury to include head injury survivors as a high risk group, and if funding came their way they might consider doing a systematic review. I have written back going through the 4 criteria for a high risk group and asking what more needs to be done for head injury survivors to qualify.
I think, looking back, that the reason Today didn’t use the story about the army and screening was because I stupidly didn’t realise that ‘We’ll have to interview some people with hypopituitarism’ meant ‘Please find me some people to interview with hypopituitarism, preferably within the hour.’ How could I have been so dim? Of course this busy woman who knew nothing about the topic was not going to be seeking out hypopituitarism sufferers herself. It took me days and days to realise this, and then a cold feeling crept over my heart. Still, I just have to keep learning from my mistakes. And maybe have some hypopituitarism sufferers lined up for next time.
Wednesday 8 June 2011
Back from a lovely holiday in Guernsey. No reply yet from Prof Hawton, and no reply to my complaint to the BBC. I have written the BBC another letter copying in Headway and another charity and will send it recorded delivery. Now off to take baby Katherine to Messy Play.
Forgot to say, I wrote to Robbie Williams’ agent in the light of his testosterone revelations, giving the info and asking if he’d ever had a head injury! No answer though.
Monday 13 June 2011
Last week was busy because we got back from Guernsey on Tues night, then I drove off on Wednesday, first to call on my nephew at Warwick University, and then to Cardiff to the evening launch of a poetry book my friend Pat had illustrated. This was held in the wooden Norwegian church on the sea-front, a magical place, and then I spent the night at Pat’s house in her attic room which has a slanty openable skylight you can stick your head out of early in the morning, and see the sun dazzle all the Cardiff houses. I drove back early because I wanted to be in time for a phone call from an endocrinologist-cum-lawyer who kindly gave me advice on how to break through into personal injury. He says they’re ‘incremental’ and the one thing that would bring swift change would be a legal case. He gave me the name of a journalist who might help. I’m often surprised by people’s generosity. He talked to me for nearly an hour and I hate to think how much that would have cost if I’d been a client. Then I chased the BIRT professor a little, my default occupation. He says the revised version won’t appear on the website until the printed version has been published, but that should be soon. Then it was time to pack for Edinburgh.
I set off early for the SHIF conference, with an arrangement that John and my daughter would pick me up and we’d go on to my niece’s house together, then stay there, childminding little K while her mum and dad went to a wedding. This all occurred as planned, and K had a wonderful time being nannied by her 3 little second cousins, particularly the youngest, 5-year-old Sally.
The SHIF conference was good. Met Dr Julia Clark and Dr Alasdair Fitzgerald, two important contacts. Dr F is setting up a study involving around 300 head injury patients to assess the impact of hormone replacement on QoL. Dr JC was interested in equipping head injury patients with a document which stated what checks they should have, and when, (including endocrine assessment), so that they could remind their GPs.
Tuesday 14 June 2011
A childminding day. Still nothing from Prof Hawton and no response from the BBC. Meant to say, re SHIF conference, that I had long chat with organiser, whose name I think is Chris Flannery, and she said “People are always saying, oh, we can’t do this or that, because we haven’t got enough neurologists / psychologists etc, but if you actually focus on what you want done, you find you can achieve the result you want without them.” She was a breath of fresh air.
Thursday 16 June 2011
I got Prof Hawton’s PA yesterday who said she’d just come back after being on holiday since 30 May, so he hadn’t been able to email anyone in her absence. ‘Poor helpless man!’ I thought. “Normally we go on holiday together” she said, adding carefully “well, not together, but at the same time.”
A reply came from the BBC. “We cover a range of issues every week in Holby City, and although we occasionally give the number of a BBC Action Line at the end of an episode, we don’t have the space to do this every time we air an issue. The character with pituitary damage featured in a relatively small guest story that wasn’t the focus of the episode, so we didn’t feel it was necessary to offer an Action Line at the end of the episode.”
My thoughts about this are: surely the decision whether to offer an Action Line should depend on the seriousness of the condition and the number of people affected? The number of minutes devoted to it in the programme seems entirely irrelevant. Also - “space”? How much space does it take to display a sentence on the screen?
I think I shall push for the Action Line page to mend the ‘sexuality’ link (which at present for some reason leads to the BBC Asian Network page) to send people to a subheading ‘head injury and its sexual effects’ giving the Pit F and Headway. And make a link to my 2009 Woman’s Hour broadcast which is still on the BBC website.
One of my tasks last Friday at the Scottish Head Injury Forum conference was to unroll 2 UKABIF banners (UK Acquired Brain Injury Foundation) and erect their accompanying stands, because there was nobody else from London there to do it. I was helped by Pamela Green, who is on the staff of a Rehab Centre in Edinburgh. We found wrestling with this unfamiliar task enjoyable, and were bonded by our eventual success. And now I have another UKABIF task, which is to write a report on the conference for their website. I shall end up being employed by them.
Tuesday 21 June 2011
The longest day today. I’ve been mowing the lawn and clipping the hedge in a big soft wind. What have I done since Thursday?
In the line of Fun, we had two long walks over the weekend with the Saturday Walkers Club, and saw Dr Faustus at the Globe with our friends Frances and Robert. The walking was good, as we’d missed 2 weekend walks through going to Guernsey and then Edinburgh, but I was fantastically tired both on the Saturday evening watching Dr F from high up under dripping thatch, with a cool wind drifting in at intervals, while Dr F slowly frolicked his way towards eternal damnation. The devils bursting through the door to get him at the end were satisfyingly medieval.
Suicides and head injury
I got an answer from the NHS Information Centre to my Freedom of Information request about how many suicides had had a previous head injury - or not an answer, but at least, detailed instructions on how to get an answer. The information can be got by combining data from Hospital Episode Statistics and the Office of National Statistics, and to do that I need approval from the ONS as a researcher. I wrote asking what I needed to do to get approval, and had to chase them even to get an acknowledgment, but I did get that today.
Head injury among Iraq and Afghanistan veterans
I got an answer from the Ministry of Defence to my FOI question which was ‘how many head injuries?’ and ‘Are they routinely screened for pituitary dysfunction?’ The answer was ‘468’ and ‘No, but they are at Headley Court’. I really don’t believe the 468 figure, because I read a Guardian article in 2008 where the MOD said there’d been 585! http://www.guardian.co.uk/uk/2008/jan/16/iraq.iraq How can the figure be more than a hundred less, three years later?? Also there was another article in 2007 saying the Americans were finding 20% of their soldiers had moderate traumatic brain injury http://www.guardian.co.uk/uk/2007/oct/27/politics.military. Twenty percent of the British troops would come to around 4,000! So I have to ask some more questions. I’m very pleased about the Headley Court news though, because they were one of the organisations I wrote to early on, and maybe my information had an effect?
BBC Action Line
I wrote to Myar Craig Brown today, mildly and sweetly, thanking her for her explanation and asking to be referred to the Action Line person, copying in the Pit F and Headway, who are both being helpful and supportive.
Wrote to Dr Ashley’s colleague to see if he would help setting this up, but no response yet.
Plus a little fussing about a seminar I’d like to attend, and some communication with SHIF about their slides (time is running out for me to write the report), and time spent writing to technical people on the websites where the Holby City episode can be heard again, asking if they’d put info themselves. Probably a waste of time.
I had a letter from a friend saying how ‘just when you think you’ve got things under control, something trivial will happen - or be said - and a great well of sadness inside just breaks open and overcomes you’. She lost her brother recently and felt sad to spend time with his 7 grandchildren, none of whom he’s seen. My well broke on Sunday night, and I had to get up and play patience with Chris’s cards. It is a silly game I play, I pretend he’s talking to me while I lay them out. A lot of red cards appearing face up means he’s saying ‘Cheer up, things will be better’. Black ones means it’s a bad time. If the game comes out it means he’s on my side, and I’ll succeed in whatever I’m going to try next. If it doesn’t come out it means he’s saying ‘Come on, don’t waste time like this, do something useful!’ I know it’s completely stupid, but it consoles me, and then I’m able to go back to bed and sleep. Sometimes. Actually I didn’t sleep that time, I think I was awake nearly all night. The next morning I flopped on the bed from 9am to 11 am, going into a deep, deep slumber. Lucky I had the time to.
Thursday 23 June 2011
Yesterday I spent much of the day disseminating the news that Headley Court are screening. It’s pure gold to have a really succinct retort to the people who, even now, say ‘The incidence is uncertain, but likely to be small.’ I can now say ‘If it’s that small, why are the government spending scarce resources on screening soldiers for the condition?’
I went to the British Library through the rain to satisfy a nagging doubt I’d had about an endocrinologist I saw soon after Chris’s death. This was spring 2009 and she said ‘He couldn’t have had post-traumatic hypopituitarism because he went through puberty normally after his head injury, so his pituitary gland must have been working then.’ I went home and looked it up, and found many references to delayed onset of symptoms, and when I wrote to her saying ‘I’m talking on Woman’s Hour, I need to get my facts right’ and quoted the references, to her credit she said I was correct. But as time went on and I experienced so much deliberate obstruction, as with NICE refusing to warn patients in the discharge advice, and another endocrinologist telling me 7% incidence while at the same time telling colleagues 33% - then I began to wonder if this first endocrinologist too had been misleading me on purpose. But reading her pre-2009 articles on PTHP I couldn’t find anything that showed she knew symptoms could be delayed by decades, so it must have been just ignorance. But it would have been a good story . .
Otherwise - just stuff about the transatlantic lecture, rather tedious chasing of AV people, and today I made a start on the SHIF report. I’ve only written 140 words out of the required 1,400, but the first bit’s always the hardest.
Sunday 3 July 2011
What a long time I haven’t written here. I finished the report the next day and spent the rest of the day emailing the BMA Ethics Committee about the fact that soldiers are routinely screened but civilians not even warned. Only two people answered, one of them Steve Hajioff who was no longer on the Ethics Committee (blush!) and the other Ilora Finlay, Baroness Finlay of Llandaff. Baroness Finlay promised to share my points with the chairman (who is Dr Tony Calland, who has written to me before saying they didn’t deal with clinical issues. (This is of course not a clinical issue, it’s an issue of equality of access to healthcare).
Then a weekend walking, Bexhill to Pevensey, then spending the night at the Savoy Court hotel in Eastbourne (a pleasant comfortable place, seagulls screeching through the night), and then walking again on the Sunday, Lewes to Seaford. It was glorious weather for walking and we got back healthily tired, quite late, and I almost immediately had to set out to my daughter’s house for next day’s babyminding. I had two days with my darling Katherine, not doing much campaigning except for trying to track down PTHP sufferers who might be prepared to talk to the media about what it’s like, but no luck so far
Then on Wednesday I went to Badby Park where they held a morning seminar on long term brain injury care and I heard Dr David Henderson-Slater, Dr Nicola Brain and - hey, Prof Keith Willett, the Trauma Tsar! KW was a vigorous handsome man who looked honest and capable. He outlined his regional trauma network scheme and his commissioning reforms. At present head injury cases are rushed to acute care where they are well looked after for the first 2 days. Then they spend too long in hospital where the care is expensive and inappropriate in that patients are not getting the rehab they should (it should be started as early as poss), after which they get returned to the community and get appalling care because the money has been all used up. So he proposes that the experts get together after those first 2 days and assess what care will be needed, and the package is commissioned then. (I hope I’ve got that right.) Dr Brain’s presentation was along the same lines, but I’ll have to spend an hour or two scrutinizing the flow-charts on her slides before I can really summarise. I liked her.
Dr H-S cheered me by mentioning pituitary problems early in his talk but then depressed me by a) saying they were rare according to his own findings, though a ‘dubious’ Turkish study gave 30%, b) giving the impression that the only serious consequence was weight gain. I couldn’t help leaping to my feet at question time (blood throbbing in my neck) and saying it wasn’t just the dubious Turkish study that said that, and Headley Court were screening soldiers and I didn’t think they’d be doing that if it was rare, and it wasn’t just weight, it was sex . . . Dr H-S said then (which is true) that hypopituitarism is common during the acute stage and often settles down. But not always, I said, quoting the Berg study of 246 unselected patients of whom 20% were diagnosed . . Ah, but how long after the injury? said Dr H-S very sharply. “24-36 months” I answered - hoping I was right. At that point Dr Richard Marsh intervened and suggested we moved on.
Afterwards Dr Brain tried to soothe me, suggesting that the incidence varied according to the degree of injury in the group analysed. I was pleased that she seemed to know about PTHP, and that she asked what tests Headley Court were using. I think she may start screening. A couple of the delegates I spoke to at coffee were supportive - one had read the Berg study herself, another said I was ‘brave’ to speak out. I realise that as an outsider I can speak more freely than those with jobs to worry about.
In the car I got out my i-phone and anxiously checked the post-injury time of the Berg study, - it was 12 months +/- 6 months, so I’d been wrong! Ah, a slip that could be used against me. When I got home I emailed Dr H-S confessing (though Berg still proved my point) and apologizing for my tone, and he answered - to my relief, as I was afraid he wouldn’t - describing the difficulties in testing and diagnosing, and distinguishing the signs from other brain injury symptoms. I mulled it over and then realised with relief that I didn’t need to argue. Wiser heads than mine had examined all these problems and decided that screening was the answer. So I pretty well said that, adding that the US are screening too.
Two-hour drive back to Katherine, who had been ‘a joy’ with Linda for the past nine hours. I couldn’t have attended the seminar without Linda’s willingness to get up at an unearthly hour and stand in for me.
So, Thursday I babyminded again, this time with Yuko, my old friend of nearly 30 years who is visiting from Tokyo, spending the day with me. Part of the day was spent in Marks and Spencers with Yuko making time-consuming decisions about socks and shirts for her husband, while Katherine charged up and down the aisles with me in pursuit. (I rejected ‘hot pursuit’ as a cliche, but actually, I got very hot indeed).
On Friday I was free, so Yuko and I both went up to London, where Y went to lunch with an old student and I spent the afternoon in the British Library writing a summary of the seminar (still not finished).
Saturday Yuko and John and I walked from Tenterden to Wittersham, had a huge lunch, did a little shopping, flopped, and sat late into the evening talking in half-darkness in a reminiscent way. Yuko asked if John had those sorts of talks when he was a boy at scout camp, but he said no, they just took out cigarette-lighters and lit each other’s farts.
Today John went to Bournemouth on a long walk, but Yuko and I visited Jenny, went back to Marks and Spencers to change one of the shirts, and then lay on the grass in Nonsuch Park. It was cloudy but warm. I don’t like lying about too long with nothing to do, because of the thoughts that come, but I’m getting better at it. We came home, had a rest, had tea, sat about some more chatting, but ran out of steam.
Thursday 7 July 2011
A gap since my last entry. I’ve felt low lately, not sleeping well and playing sad games of patience late in the night. Also finding coins. I have a habit, at these times, of moodily raking the pavement with unnaturally sensitive eyes and then I find 5p coins and old dulled 1ps, or 2ps, occasionally pound coins. I put them all in a money box like a traditional red telephone booth with transparent windows so you can see the coins mount up. It was Chris’s money-box, I gave him it. As I slip the coins through the slit in the top I always think “For you, my darling,” with each one. Then after a few months I empty the full box and all these dirty coins cascade out and I count them out into little heaps. They come to maybe £16, an amount I will routinely waste on a couple of trips to a cafe. I think, why on earth did I do this?
But this week I got on well. I finished my report on last week’s seminar, which was a hard task because I hadn’t understood Prof Willett’s talk and had to look up incomprehensible abbreviations and google slides from a previous talk of his which helped to make sense of my scrawled notes. In fact I took the whole of Monday and Tuesday over it and then sent it off to UKABIF. How long will I remember what HRGs and MTCs are, I wonder? Oh, and on Monday I had a second answer from Headley Court, listing the endocrine tests they do, so I sent that on to David H-S. We are very friendly to each other now, whatever our private feelings. This seems to be how people go on in the medical profession - urbanely.
Also on Monday I was surprised to be rung by a local radio reporter wanting to interview hypopituitarism sufferers in the south coast area. Of course I’m keen to find some so spent hours emailing and phoning different people but no result so far. I found it was Christine Lord who’d mentioned me to the reporter. Her son died of new variant CJD - mad cow disease which the government allowed to be transmitted to humans through ghastly negligence, and she’s been trying ever since to bring them to account. She sent me her blog highlighting the coroners’ recent refusal to protect public health. Quote: The Health Protection Agency recently attempted to create a post-mortem tissue archive which meant taking small amounts of tissue from cadavers during autopsy to find out just how many of us could be or are silently carrying/incubating vCJD. The Coroners Society of England and Wales refused to participate in this survey which has the backing of every expert in the field of vCJD/prion disease and medics/scientists across the UK.
Words can’t express the disgust I feel sometimes for government organisations. Christine’s website is called Justice for Andy and it makes shocking reading.
On Tuesday I got a moving email from a mother whose son had an endocrinological problem in childhood with different pituitary symptoms emerging in adulthood. She has had to fight for him every inch of the way and it must be heartbreaking. This reminds me of a mother I met at the CBIT conference who told me of all the difficulties she’s had fighting for her brain-injured son. How hard it must be to keep going for years and years, when you not only have to grapple with bureaucracy but actually look after your poor damaged child at the same time.
One of our walking friends sent me details of a contact who worked on a men’s mag and it looks as if he may be able to work a few words on hypopituitarism into an article he’s writing, so that’s good.
Managed to fix up a meeting date with Papyrus the suicide charity. Had another poke at the BBC Actionline page through an unofficial route, but no answer yet.
Today I drove Yuko to Heathrow and returned, taking 3 hours over it. So she’s gone back to Tokyo and radiation - though she says someone in their block of flats has a geiger counter and measures it, and it’s not too bad. The readings are worst near the drains, which suggests the rain is contaminated.
Friday 8 July
An uncertain day, one minute rain drumming on the conservatory roof, next minute brilliant sun. Yuko said there’s a Japanese word for a sudden downpour you can’t argue with - that keeps the lover indoors with his girlfriend although it’s time to go - she said that literally it means “lover-not-leaving rain”
Today I wrote to the BBC still pushing for the Action Line A-Z page to contain support for erectile dysfunction after head injury (my rottweiler act, I’m not letting go) and then I wrote to my MP asking why there was such disparity between military head injury patients and civilian ones and what was being done to address it. I also nursed various media hopes a little closer. Then took K to gymboree where she was extravagantly extravert, embracing the play-leader 3 times and then moving on to a baby or two. She’s on the verge of speaking more - she saw me drinking orange juice, refused to be fobbed off with dilute juice in a bottle, and stood firmly in front of me looking at my glass, saying “No! Me!”
Wednesday 20 July 2011
Twelve days since I wrote! On 9 July we went on a sailing holiday in the Scottish islands (round Mull, Colonsay etc) in a restored 100-year-old ketch called the Bessie Ellen, setting out from Oban. I didn’t in the least expect to enjoy it, but consented to go because John promised I could do as much or as little rope-pulling as I wanted. (Little, was what I planned.) So we flew to Glasgow and drove to Oban through the pouring rain - but when we got there, the sun came out! And the rest of the week, bar 1 day, was blue skies and sparkling sea, and scenes of incredible beauty. We saw puffins and seals and dolphins, and an old castle perched on a rock (Duart), and Fingal’s Cave, and the wide sandy sweep of the bay on Colonsay.
There were 12 holiday-makers and we all had bunks let into the walls of the hold, so you rolled, basically, into a dark rectangular hole and drew the curtains, reading yourself to sleep by your own private light-bulb. The rocking water lulled you - I slept better there than I had for ages. The crew of five were the most natural people you could ever hope to meet, hardworking, doing what they loved, spontaneously laughing. They’d sailed the Bessie Ellen to the Canaries and the Caribbean, and even over to the east coast of America. I couldn’t believe that this comparatively small wooden box we were all in, could go bouncing through the water, miles after thousands of miles. Weren’t they scared? But I don’t think Nikki, the owner, ’did’ fear.
It certainly hadn’t fazed her to supervise the renovation of the BE - a huge operation which took place in Denmark and which we could follow in 2 fat photo albums. Niels said there was an old Danish carpenter who wouldn’t speak to anyone, but he’d speak to her because he respected her. She was amazing - imagine a sea-heroine (pirate?) from past centuries - she had a posh, joyful ringing voice, laughed a lot, swore a lot, smoked, never brushed her hair, climbed up the mast like a young boy, cooked like an angel, and bossed us in the friendliest way as we confused the ropes.
I found a Danish dictionary with Phrases, and carefully chose moments to ask Niels in Danish ‘What time is it? What size shoes do you take?’ - he was wonderful too, a fuzz of ginger bristle all over his head, blue laughing eyes, big grin, simian, a growly Danish voice. He wrote me a ‘Brev til Joanne’ (letter to Joanna) which said ‘jeg har skrevet dette brev for at se hvor god du er til Dansk’ (I’ve written this letter to see how good you are at Danish) which went on, ‘I have three questions for you. What are we doing now? Is Nikki a man? What do you think of the weather?’ Later I wrote him one, looking every word up in the dictionary, telling him about head injury (poor N, more than he bargained for!). But he told me about his own friend (‘He had aspergers, he was an autist’) who’d committed suicide and what a shock it was.
Anyway, we’re back home now. I found a letter from our MP. “The information you have obtained [screening at Headley Court] is most interesting and I will certainly raise the disparity point with the DoH in due course. Before doing so, however, I thought it would be useful to confirm the extent of routine screening for hypopituitarism for all armed forces personnel suffering a head injury. I have therefore written to the MoD” . . Maybe I’m mean, but I think he already knows the rest aren’t screened; maybe he even knows that only 27 have been screened at HC since Nov 09 out of which an undisclosed number less than 5 have tested positive. I think he may be manoeuvring to say “Dear Mrs Lane, in view of the exceedingly small numbers involved I do not feel it appropriate to ask a question in the House at this stage.” But he’s my MP, he should be championing me, not actively taking steps to thwart me! I wrote back saying, in effect, ‘While you’re at it, can you ask them who took the decision to screen, and what the process was? I imagine it was some quite distinguished committee, and they would have sifted the evidence carefully.’ Today he wrote: “I think it would be best to await the response to my letter of 11th July to the MoD first before going back with your other questions . .” Perfectly reasonable, but . . . I don’t feel I have a staunch ally here. Ah!
What else? Ed Vanstone did put a warning in a penis article in the on-line version of Men’s Health http://www.menshealth.co.uk/sex/your-penis/penis-problems-solved (fourth slide), and a link to this website. Now I’ve looked at it I’m very happy, besides knowing far more about penises than before.
My journalist friend drew my attention to ‘Manifesto for the current understanding and management of traumatic brain injury (TBI) induced hypopituitarism’ by Tanriverdi et al, which has only just come out. I traipsed up to the British Library on Mon to find it but the June issue of Endocrinological Investigations hadn’t come through yet. I managed to get a final draft from one of the co-authors. I gave a summary of the screening strategy to my friend Dr H-S who had been outlining the difficulties to me, but said my campaign (if it could be called that) wasn’t for screening. Rather, it could be summed up in 5 words: “Warn patients, families and GPs.” If that happens, everything else will. And nobody can say patients shouldn’t be warned. It’s amazing though, how well the government has so far ensured that they aren’t.
The BBC is a case in point. I had a letter today, quite long, but I shall quote it all. “The BBC Actionline website works in conjunction with the BBC Action Line, which supports programmes as requested by the Executive Producer and, on occasion Editorial Policy. The on air trail will point viewers and listeners to the website in the first instance and a telephone number, as an alternative, allocated to the programme for a specific length of time. This might connect to live agents or have a recorded message attached, to mirror the content of the website. Appropriate information is available on the website for a maximum period of 40 days after the last date of transmission of the programme and then, made unavailable so that if details of the various organisations change, the published information is not out of date. So in fact, there could never be a link to a programme broadcast in 2009.
We maintain a database of organisations, charities etc., which contains up to date contact information, plus an agreed text that can be published on the website and used on the telephone service. This is updated at least once a year on an ongoing basis so that information is current as far as possible. We would be happy to include The Pituitary Foundation in this database for future use, when appropriate. However, it is not up to the charities to demand when their details are included after a trail, nor should it be used as a platform for campaigns, which, I’m sorry to say, is sometimes the case.”
My reaction, when I read this, was to remember what a mess the Action Line A-Z page was when I looked at it before (see 20 June) with wonky links and references to ancient programmes and think “Surely I can find something there as a precedent?” But lo, everything had changed! No longer ‘Sexuality’ with links to the BBC Asian Network page, no mess, no links to old programmes. It had all been tidied up and streamlined, on purpose it seems, for them to be able to say ‘no’ to me. So that’s why they’d taken so long to answer! They must have been beavering away against the clock.
I also feel nettled at the accusation that I’m using Action Line as a platform for a campaign. I’m just an old granny, trying to ensure young men like our son have access to the information that will stop them committing suicide! It takes a clever spin-doctor to imply that this is a somehow disgraceful occupation that should be discouraged.
Badby Park wrote to ask if they could post my much-laboured-over report on Keith Willett’s presentation on their website. I feel pleased. One more little ‘pituitary’ sentence on the internet.
Thursday 4 August 2011
Such a long time, it’s hard to think what I’ve done. We had a big family wedding - my nephew Alex who was so helpful in setting up this website marrying his Chinese girlfriend Karin - and had an influx of relatives staying over the weekend before last. The wedding was in Lewes castle with a view far over the windy countryside, sea in the distance. Nice to see my brother-in-law over from New Hampshire with his American wife. He gave me lots of useful advice about meta-tags and adwords, some of which I’ve put into practice, but really I need someone with an enthusiastic young technical mind to help me. (Another nephew?).
I rang the BBC Actionline man in the face of my US sister-in-law’s advice not to (“It’s a butt-head way, it won’t get you where you want”). Her, and my brother-in-law’s, advice was to approach the medics responsible for the articles on the website and suggest they update, so that I would be doing it through the back door and not getting anyone’s backs up.
She was quite right about it being a waste of time, the BBC man kept saying “You see how my hands are tied,” and we engaged in a long unproductive wrangle (David, if you’re reading this, sorry!) but he did put me in touch with the BBC Health website man, who actually sounded as if he might be helpful. He said if I sent him the research he would pass it on to their medical team. I sent a long screed yesterday. Maybe he will prove me entirely wrong about the BBC. I hope so.
The other thing I did last week was to meet Ged Flynn, the CEO of PAPYRUS. He listened attentively to my presentation, said he would put PTHP information on the PAPYRUS website and expressed willingness to discuss including head injury survivors as a high risk group in the Suicide Prevention Strategy, so I was glad we’d met.
I pursued the UK figures for head injuries and suicides through the ONS but they said “The area that deals with mortality data in ONS informs me that we don't hold the information you require. ONS only holds 'cause of death' but that wouldn't indicate a previous head injury.” They suggested approaching DAIS@ic who might be able to arrange a longer term flagging study with the Medical Research Information Science. This sounds to me like a reluctance to do anything complicated, and a delaying tactic. The figures must be there already, if one could only work out how to get at them.
I had a couple of not-quite-suitable replies to my ad for a hypopituitarism sufferer who would talk on radio about the condition. I need someone who is diagnosed, and someone whose hypopituitarism was caused by brain injury.
I emailed another FOI query about Headley Court - who decided to screen for PTHP, what evidence did they examine? - no response yet. Nothing from my MP.
I emailed Mrs Tricia Barnes at what used to be the Sexual Dysfunction Association but is now the Sexual Advice Association, asking if she would update their information leaflets on erectile dysfunction, loss of libido and women’s sexual problems. I wonder what luck I’ll have there?
Now I’m pretty much up to date. A quarter to eleven, time to go to bed. Oh yes, the Oxford Headway newsletter (who long ago agreed to publish an article by me but then strangely changed their mind), at long last - upon further prodding and a mention of Headley Court - suggested a 450 word article which I have written and sent them. And I got an invitation to speak to medical students at a local hospital.
(Continued on Blog 2)