I can count on one hand the number of health professionals that have supported us during Joshua’s life, who have delivered exactly what they have promised. The first one was our amazing health visitor, Barbara, who has sadly retired now. She was a very matter of fact lady but she always did what she said she was going to, even when it was beyond her remit. I can remember asking for some support at clinic on a Monday afternoon, and by the time I had walked home, she had left an answer phone message for me at home! I was devastated when she told me the news that once Joshua was at school, his health needs would be met by school nurses and not her any more. But she was so special that, if she could help, she would, and I called her one day in a panic, not knowing where else to turn, looking for a special dentist as, for some reason, I was convinced that Joshua had toothache. even though we were no longer on her books, she had got me an appointment for that same afternoon.
In my experience, that level of commitment to her patients is very rare and we are much more used to hearing that ‘that is not my job, you need to speak to…’ as the buck is passed over and over again. There is the bewildering division between physiotherapists and occupational therapists who work for Health and those who work in the community. why the distinction when he child and the need is the same? I have never understood that. As Joshua’s epilepsy has developed and became his greatest problem, we were passed onto pediatric neurologists who only wanted to talk about his seizures and then it got more specialised, as we were considering brain surgery in more recent years to attempt to prevent his epilepsy, then we were only given appointments with neurologists with an interest in surgery. So while we were all focussed on his potential hemispherectomy, nobody was attending to Joshua’s walking or other issues.
Last month we spent 2 weeks at a hospital for intensive rehabilitation/physiotherapy to attempt to loosen Joshua’s wrist and fingers in his right hand which had become very stiff and contorted since his surgery the yea before. we were really well looked after there and it went much better than expected. they told us during our stay that it wa critical to keep up physio and stretches to maximise the benefit of his botox injections in his arm, and they promised reports and calls to school and local physios and OTs. we left the ward a month ago and since then we have not seen a report or received any word about his exercises. It really does feel like, as so often before during Joshua’s 14 year life, that once we were no longer under the Doctor’s nose that we are forgotten. This is a very real and common problem within the NHS, presumably due to a lack of resources but maybe also because the likes of Barbara are few and far between!