Here some suggested organisations that offer expert advice on SN.
NHS complaint - is it pointless to carry on?(7 Posts)
I thought that the SN boards members would be able to tell me if this is worthwhile or just pointless.
Youngest ds, now 15, was diagnosed with Hypermobility syndrome and chronic pain syndrome by GOSH aged 10. They identified some psychological issues regarding the chronic pain but felt he could be supported by local services.
To cut a long story short, the local services never stepped up. Physio was helpful but said they felt there was little they could offer as psychological factors were kicking in. CAHMS said they couldn't help as they could not separate what was psychological from what was physical and they thought ds was "unsuitable" for CBT.
A lovely paediatrician saw ds for a long while (liaising with school to establish ds's condition was genuine) but discharged him as all he could offer was pain meds that didn't really work. During all this time ds has hardly made it into school (attendance often down to 22%) and has never got properly in control of the pain and mobililty issues.
Last year I got annoyed with all the media reports of our relatively new local integrated pain services for adults. There is no support for under 18's
In a fit of peak when coming across something on the local health commissioning board website asking for feedback I posted "Why no integrated pain services for under 18's? Wasted lives!" They then took this up as an official complaint but when I finally got the result it just said we don't offer integrated pain services for under 18's, went through a list of all the people ds has seen (physio- discharged, camhs - discharged, paed - discharged) - as if I didn't know about all this! Then suggested referral back to paed.
Well he was already back with paed just before the result of the complaint came out but as ds turns 16 later this month he is about to enter the great void that is 16 - 18 services (i.e. nothing much). His paed (lovely man) is trying to find someone who will see ds in this time.
I've managed, through my own research, to get ds referred to Bath Pain Services (a national resource that does help under 18s as well as adults) and he's got a one week inpatient course there over the summer.
Is it worth carrying on with the complaint about the lack of local service? Or am I just banging my head against the wall? I feel sort of guilty that some poor soul has had to produce this list of people/places who ds has been referred to over the years which is just daft as I have made it clear to them I'm not complaining about the people he's seen, I'm complaining that there is no appropriate provision for under 18's. I know there are others out there locally in the same position. Surely we can't all leave our children festering until they get to be adults. Is it fair to expect everyone to go to Bath?
I put a complaint in about my LA, I have complained about my NHS.
Both times I ruffled some feathers and got apologies but nothing changed in services or my child.
You do what you have the energy for I think. If the times right and you have the time and energy then what's there to loose?
It might seem odd but I feel uneasy with taking up scarce resources if it's not going to result in some sort of change. Basically, there hasn't been a service of the kind ds needs available locally. So he could have be left alone with no one seeing him, but because I made a fuss about this then he was referred and re-referred to people and services that had already said they couldn't help. Which is a lot of clinic time to get nowhere. But if I hadn't make a fuss then it would have meant accepting ds being left in pain, with little access to education and no real time social life and no prospects of things getting better.
I don't feel continuing with the complaint will get anything changed, and this fits with what you've experienced 2 boys. I don't want to just drop it as then they assume that they've resolved the issue. It needs a campaign but I don't think I'm up to it. Perhaps I'll tell them that no it isn't resolved, that what they suggest (ongoing help from paediatrics) is pretty pointless given that ds will turn 16 in 2 weeks time, there should be a local service and that as there isn't we've had to push for the Bath referral. Hopefully this inpatient programme will set ds on the right track and maybe by then I'll be in a better position to try to contact other parents who might join a local campaign.
I complained about waiting lists for ASD assessment in my NHS which was eventually upheld by the Health Ombudsman with small amount of compensation. The changes that were made by my Trust were an injection of funding into the department so slightly shorter waiting lists and they finally got the kick they needed to recruit a new member of staff.
What do you want to achieve with your complaint - at the end of our letter we put what we wanted the outcomes to be. What does NICE say about national guidelines for under 18 pain management - if this supports your case then quote this at them in your letter.
As a health professional I would always say complain if you feel you should. It may not seem like it, but complaints are taken seriously. You might only get an apology, but the complaint may have made its way to the commissioners and may influence future service commissioning and delivery. All that takes time though, and you may not see the end result of the complaint, you may just get an apology (which unfortunately doesn't help your situation) but there may be more going on behind the scenes.
Sorry to hear of your DSs difficulties, I hope you find some resolution.
Thanks for the replies. What I'd really like to happen is some move towards establishing an integrated pain service for under 18s. I recognise that this won't come through in time for my ds but it would be good to know that younger patients would be more supported in the future. This really needs a campaign but due to a few difficult years (over a decade if I'm honest) in our family I cannot face starting this myself just now. Selks it's good to hear that complaints sometimes filter through and lead to service changes.
As far as ds is concerned he's got this referral to a national pain service which is the best outcome for him. For this reason, I've been uncertain about whether continuing with the complaint can help as they'll only look at my son's case and not the needs of all local DC with chronic pain. But their answer that he can go back to paediatrics when they know he's about to turn 16 and will be discharged, still not old enough to access the adult service, is just so useless that I'll have to put something in writing about it. Otherwise it will just eat away at me.
Join the discussion
Please login first.