No reply as yet to the e-mail I sent last week. I guess investigations take time….
After we got Very Important Medicine back into Grenouille’s treatment régime on Wednesday, it took a little while for things to settle down. In fact, G wasn’t well enough to go to school on Friday, which meant I had to do some emergency rescheduling for my planned activities, too, so both this blog and my head are still somewhere behind ourselves. I want to go back a week to the #107days/Day 82 Conference on Learning Disability Studies. I have to admit that before the Conference, and despite its title of “Challenging Attitudes, Changing Lives”, I was more than a little sceptical.
I have reason to feel deeply uncomfortable with the word ‘Studies’ in regard to dudes, although thus far more on the medical than on the social science side of things. Grenouille is ‘an interesting case’. Born with a rare genetic difference, G has gone on to develop some even more unusual medical conditions as a result of the underlying disorder. Health professionals have been keen to document and discuss these, and although the formal studies are designed to be for the benefit of affected individuals, I am not so naïve as to think that’s their only purpose. G’s father does research, and I know exactly what sort of pressure researchers are under to publish regularly, and how much of a career-boost a striking paper can be. I also know what is supposed to happen to get ethical approval for targeted studies rather than generalised ‘fishing expeditions’ and how informed consent to participation is supposed to work. So I went ballistic the day that G was diagnosed with an ultra-rare new condition and the doctor doing the consents for medical photographs asked me to sign the form with three consent boxes – (a) for personal medical records, (b) for use in training and education within the Trust and (c) for publication in research papers and professional journals, all pre-ticked. I gave him a fishwife earful there and then, seized his pen and scrubbed out (b) and (c) so hard that I shredded that part of the form and left biro-lines on his desk, and marched off to medical photography shaking with rage and with tears of fury blurring my vision. The medical photographer, looking at the tattered pink slip I presented, and at my no doubt red and blotchy countenance, said, gently, “I see it’s very important to you that these photographs be kept confidential. Please be assured that they will be.” That calmed me enough to be able to help G manage to sit still, in uncomfortable positions, under painfully bright lights, for the photographs; but I later wrote to the Chief Executive of the Trust to complain about its consent processes, which seemed to me to be severely lacking in the ‘informed’ component. The Trust took the view that because I had deleted the unwanted consents, there was no harm done, and therefore nothing wrong with their process. They seemed unable to understand that the point was, that not everyone would feel able as I did to call medical personnel out on poor practice. G’s Papa also went up vertical when he heard what had happened, but neither of us managed to get the Trust to rethink their concept of ‘informed consent’ and how properly to implement it. Sigh.
On telling the story to friends – in an attempt to check that I was not being unreasonable – I got a pretty consistent response: a sharp intake of breath, followed by variations on a theme of ‘How dare they?’. “That’s evil,” said a friend with three (typical) children. Only two people failed to react with outrage: a GP and a pharmacist, who both seemed to think that potential research benefits trumped informed consent. “Not surprised,” said G’s Papa, who has spent years trying to inculcate the ethics of research and consent into medics, and has found with each new study that his work is to do over again.
My other reason for feeling dubious was that over the years, G and our family have come into contact with, literally, hundreds of professionals. I last totted them up when G was still in nursery and we had to do a list of ‘relevant professionals’ for the multidisciplinary team that was managing G’s entry into formal education at age four. Even then, it ran to over fifty, and since then we’ve moved to three new hospitals and into community care teams as G’s needs have become more complex. But with a few honourable exceptions, most of what we’ve achieved for and with Grenouille has come about, not from professional actions, but as a result of our own efforts, or by following tips and hints from other parents. That’s not to say that the professionals haven’t done their jobs; they have. Still, we’ve had to go looking for them and tell them what we needed, rather than them coming up with ideas and suggestions. The honourable exceptions include, but are not limited to, the Health Visitor who made sure G got Disability Living Allowance, by rocking up one day with the forms and a big box of tissues, and offering to sit with me until the whole hideous forty pages were completed; the paediatrician who, without being badgered, did referrals to every conceivable specialist for screening AND one to the education service so that G was known to them from very early age; and the Head of the specialist nursery who spontaneously offered to write a report to help us start the process of getting G a Statement of Special Educational Needs.
On the other hand, we would never have found the specialist nursery – which was in a neighbouring town – if a mother whose daughter had previously gone there, hadn’t stopped me in the street for a brief conversation, written the contact number on a scrap of paper and pressed it into my hand. The woman was a stranger to me. She just happened to clock Grenouille one day and decided to be brave and, in the nicest possible way, to stick her nose in. I never met her again.
So I hadn’t noticed LD Studies making any difference to professionals’ attitudes in our everyday lives. I guess my attitude to such academia was a bit like that of my father’s colleague’s housekeeper. My father was an academic, and one of his senior colleagues – in a largely male-dominated field – was a single woman. She lived somewhere in a beautiful and rural part of the Thames valley, in a big Edwardian house set in extensive grounds. As a woman living alone, with a housekeeper who ‘lived out’, she preferred to be listed in the telephone directory by her academic title, rather than as ‘Miss’.
In her house, as in many older houses at the time, the single telephone reposed not in Dr. L’s study, but on a table out in the hallway; and one morning when she was sitting at her desk, she heard the housekeeper picking up a call. “Hello? Yes, this is Dr. L’s residence……. Oh dear. Well that does sound nasty. Poor little mite. Mmn, I’ve heard there’s a lot of chicken-pox going about. Yes, if he’s got spots in his mouth he definitely needs to see a doctor….. Well, you’ll have to phone the surgery to get an appointment, I can give you the number if you don’t have it. What? Oh, no, there’s no point in asking to see Dr. L. You see,” – lowering her voice, which still, however, clearly penetrated the study door – “she’s not the sort of doctor who could do anybody any good.” Dr. L, whose work had in fact brought a lot of (non-medical) benefits to humanity, thought this a tremendous joke and would happily tell the story against herself.
(As an aside, the joke in G’s Papa’s family was that while G’s scientist-Papa is a ‘real’ doctor, since he has a PhD to his name, his medically-trained ‘Doctor’ brother was merely an MB ChB. Although since he became a consultant, Dr. Uncle has reverted to ‘Mr.’ It’s all very confusing!).
Anyway, when it came to academic doctors and the Learning Disabilities Studies programme at Manchester, I couldn’t have been more wrong. Far from putting dudes under a research microscope and prodding at them to see if they will do anything interesting, the Manchester course starts from listening to the experiences and views of dudes and doing a lot of thinking about how other people can support them without getting in the way. The course is built on foundations laid down by the Partnership Steering Group, a body of dudes, academics, students and supporters, who set up the framework for the programme that is delivered to students. Dudes teach students on some of the courses, do research and publish papers. In 2012, they edited an entire special edition of the British Journal of Learning Disability. And last Monday, it was dudes chairing and running the conference. Absolutely fantastic.
My eyes filled with tears again, but this time of gratitude. I was so pleased to find an academic milieu where people with learning disabilities were treated as just that – people – and where making the time for them to express their opinions wasn’t even seen as a ‘reasonable adjustment’, but simply a basic human courtesy. It fairly took my breath away, and it was a struggle to find the voice and volume to express my appreciation of their work.
Later in the day, we heard from a former student on the course who now works in service commissioning, talking about how what she learned on the course has affected her practice. It has taken time for her to get into a position where she can begin to influence the future direction of services and change them for the better, showing clearly how important it is for this type of course to be made a permanent part of the academic offer, so that change can propagate through the system.
Having gone in as a sceptic about LD Studies, I was so rapidly converted that by the end of the morning, I was horrified to learn that after twelve years, the Manchester course is to close. The Partnership Steering Group’s statement says:
BA (Hons) Learning Disability Studies – University of Manchester
• Our course has achieved so much since being invited to the university in 2000. It has raised the profile of partnership approaches to teaching and research in learning disability studies; learning disabled members contribute their ‘expertise by experience’ to PSG meetings, lecturing, conferences, assignment assessment. PSG achieved a world first with the peer reviewing and editorial for the special issue of the BJLD; graduates are well-equipped to take up roles as social leaders in general but in particular in learning disability services for adults/children; 100% NSS score last year
• Learning disabled people are some of the most excluded and vulnerable in society. on average they die 16 years before members of the general population due to inadequate investigation, diagnosis and treatment (rather than lifestyle choices like the general population). Services are not working – evidenced by recent abuse scandals like Winterbourne View, Fiona Pilkington and daughter, MENCAP Death by Indifference reports. Last year CQC found over half of learning disability services did not meet expected standards, with failings a direct result of care that is not centred on the individual or tailored to their needs. Person-centred thinking and approaches are a key principle of the LDS course.
• Manchester Institute of Education says there are plans for learning disability studies to be continued in some capacity but at the present time they will not inform us how. We are very concerned that this will only be in relation to children (i.e. education/schools) – thus overlooking adults completely i.e. the majority of life.
• University says course was closed because we didn’t reach target admission numbers but the method by which the closure was carried out was unfair and did not allow students to be admitted via Clearing or right into September as is usually the case. PSG members don’t understand why it all has to be about numbers/targets. They think it should be about people – improving the lives of learning disabled people. Therefore on behalf of students past and present and the PSG and learning disabled people we would ask you to sign our petition to request that the university reconsider their decision to close.
Just to repeat, that petition is here.
It aims to save a course that not only provides a space for dudes’ voices to be heard, but trains future professionals to develop the ‘right kind of ears’ for properly listening to dudes. The sort of ears that would have heard enough to prevent Connor Sparrowhawk from drowning in an NHS bath.
I hope you will feel able to offer your support.