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Lack of SALT for adults with CP
forgoodnesssake
Member Posts: 342 Pioneering
I will try and be as concise as possible but we are encountering a situation that epitomises everything that is wrong with services (or lack of) for adults with CP.
My son is 22, athetoid CP, GMFS 4, no speech (uses AAC) and significant dysphagia so on blended diet, all orally fed.
Since becoming an adult he has had virtually no health input at all and no SALT, (except briefly from ACE at the assessment for his current AAC device)
His dysphagia is not monitored at all now.
He is a student in another part of the country and as such has support from agency staff who need training in a range of issues, including how to feed him safely and give him a drink. We usually end up doing this training, however he is now fully CHC funded (with his dysphagia etc being one of his high need areas) and there are questions about appropriate training and who will provide it. I have therefore been trying to find SALT input for this, but have drawn a complete blank.
I am told that private therapists will often not want to do dysphagia for insurance reasons, then the NHS service in his University city say that normally they would expect his home SALT to dot it, as they themselves do travel out of area from time to time to train for their clients' care staff.
We have therefore asked his GP for a SALT referral, which she has put through, however I have been informed in no uncertain terms that there is no ongoing SALT input for adults with conditions like CP; their service is for adult acquired and deteriorating conditions
only, or very specific acute episodes. They would not provide training (in fact the SALT assistant actually asked me what sort of training I meant) and when I asked who would do it, she said "you". At that point I had to work very hard to be civil and pointed out that a) we are not trained SALTs and the CHC funding is asking for that and b) we won't be around for ever!
We already have to do all his AAC stuff except providing the actual device: is it REALLY the case that we are responsible for everything else as well? (rhetorical) I have asked to speak to the service manager and I am going to try and get some advice from other SALT sources I am in contact with...but I really hope I don;t have to resort to an MP complaint.
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Specialist Information Officer - Cerebral Palsy
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I have had a reply from my SLT contact:
Typically the NHS SLT service will only see a child who lives in their area if the GP is also registered in that area. It might be worth registering with a term-time GP if this is the case. Lots of services now accept self-referral so it might be worth the family calling up the local team themselves. Google often brings up contact details.
If this man has not seen an NHS SLT for his swallowing in some time and there are concerns regarding safety because of change in carers, this would possibly fall under an acute 'new' need and they should stress that in the referral if it is the case.
If the family wanted to go down a private route - the 'association of speech and language therapist in independent practise' (ASLTIP) is a good place for them to look. You can filter by area and speciality. There are definitely private SLT's in the paediatric world who see children for dysphagia. https://www.asltip.com/ The family should make sure the professional is registered with the health professions council. They can easily check this register here: https://www.hcpc-uk.org/. Training could be considered remotely now that people are more used to working in this way - as long as the clinician feels this is clinically appropriate.
Finally, I understand a letter to the MP is not wanted, however, there is lots of talk at the moment among the profession about needing the government to recognise the need for appropriate SLT funding. The family should not feel bad about raising this with them. It will be to support services who aren't being funded appropriately rather than to criticise individuals.
I hope some of this is useful?Specialist Information Officer - Cerebral Palsy
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