In my last post…many moons ago, I wrote about G’s cyst. G’s cyst became massive. A lump the size of a golf ball on his forehead and growing all the time.
Despite the GP’s insistence that it would probably shrink or probably not get any bigger, it did and even the plastic surgeon we saw in May this year said it would have been easier if they’d seen him earlier. That said, he told us it would be a pretty straightforward operation that would carry limited risk.
In spite of these reassurances I was worried. Actually I was terrified. In light of all the horror stories about the NHS constantly in the news and on social media, not least the Mazars report into deaths of people with learning disabilities there are obvious consequences to families like ours – while this was one Trust, the knock on affect for many of us is a lack of trust in all NHS Trusts. The idea of G going into hospital, any hospital filled me with fear and dread. However much we knew it needed to be done.
A few weeks before he was due to have the surgery I contacted the Learning Disability Liaison nurse, the fabulous Stephanie Ross (I’m naming her because she is bloody brilliant). Steph worked with me, his staff team and the ward where he’d go for his surgery to make sure all the right adjustments were made to make his visit successful. We discussed things like G’s inability to wait and the fact he’d need a separate room (for everyone’s sake not just his and ours). We talked about the fact he wouldn’t keep his wrist band on or his surgical stockings. I told her how I worried he wouldn’t stay still to have the cannula put in and that I couldn’t even see him tolerating the other pre-op checks like blood pressure etc. Even though he hadn’t had an op since he was 3 years old I had a pretty good idea what he would and wouldn’t tolerate – after all this is a young man who won’t even keep a hat on in cold weather!
Food has always been a good way to keep him distracted or keep him relatively still but of course he’d need to be nil by mouth for his surgery– another worry – G’s not good with nil by mouth!
Having talked all this through with Steph I felt less anxious. There were things that could be changed/done differently and she would prepare the staff on the ward for his arrival.
On the day of his surgery we (Myself and two support staff) arrived at the JR and went to the reception on the ward. They showed us to his private room and we asked if it would be okay wheeling him around the ward in his wheelchair and this was fine. G was happy to watch the hustle and bustle of the ward and particularly liked a spot where he could wave and smile at a pretty, young receptionist. As his energy flagged due the lack of food and drink since the evening before he was more content to stay in the room and look at his Ipad.
After a pretty long but less distressing wait than we were anticipating we were eventually seen by the Anaesthetist and the surgeon. We talked through the options for getting him to sleep and what stiches they would use. They couldn’t have been more helpful. They explained what they’d need to do and asked us what he would or wouldn’t tolerate. The Anaesthetist suggested giving him a drug to make him sleepy with the warning that it could have the opposite effect. In which case they’d have to postpone because there was no way they would get the cannula in otherwise and this would be too distressing for G. We decided, nervously to risk it.
When G had an anaesthetic before he had come around very quickly. He tried to get off the bed and attempted to pull the cannula out. They agreed we would be called as soon as he was out of surgery and in recovery.
Luckily the drug worked – phew. We managed to get his wrist band around his ankle and his surgical stockings on…and his gown half on. We even managed to get him on the bed while he was getting sleepy – even this would have been impossible before. The Anaesthetist cheered when she came to see him and said I could go with him to the anaesthetics room while he had his cannula put in.
The term commonly (and legally) used for all this is ‘reasonable adjustments. I really dislike the term ‘reasonable adjustments’… the word ‘reasonable’ is so subjective isn’t it. What I consider reasonable may be completely unreasonable to someone else and visa versa. The GP clearly thought we were being unreasonable wanting the cyst removed when it was much smaller.
I prefer the term person centred, and the staff at the JR couldn’t have been more person centred. Because they listened to the people who know him best and did everything to make the experience as good as it could possibly be for G (and us) his op was a success. While I deferred to the expertise of the medical team at the hospital they deferred to mine and his staff’s knowledge of him as a person. They adjusted their usual way of doing things to fit his needs and if this kind of thing can work for G it can work for anyone.
I sit on the Transforming Care Partnership Board. We talk a lot about reasonable adjustments. I’m trying to gather other people’s experiences with a view to changing poor practice and highlighting good. So many of the other families I’ve told G’s story to have also mentioned great experiences at the JR and personally I can’t praise them enough. We so often hear the horror stories of when things go wrong for people with learning disabilities and with elderly care too and of course these stories need to be out there. However, there is clearly some great stuff happening too and these need to be heard. And, while I very much hope we won’t need another visit to the JR for this kind of operation anytime soon I think I’ll be less terrified next time.
As for G, well just look at this handsome face!