Cerebral Palsy
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Lack of SALT for adults with CP

forgoodnesssakeforgoodnesssake Member Posts: 323 Pioneering
edited October 24 in Cerebral Palsy
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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Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    This absolutely unacceptable @forgoodnesssake. I will speak with some SLTs I have been working with and get back to you as soon as I can.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • forgoodnesssakeforgoodnesssake Member Posts: 323 Pioneering
    Thanks...I have posted this on adult CP hub too
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    Hi @forgoodnesssake

    I have had a reply from my SLT contact:

    I have a few thoughts that might be helpful which I have put below. 
    • 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? 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • forgoodnesssakeforgoodnesssake Member Posts: 323 Pioneering
    Thanks.  Just to clarify, he is 22 and so it not paed. services we are looking for (if it was he'd probably be OK, ironically as they do provide ongoing up to the age of about 18)
    We have looked at the term time GP thing before but it seems to be the case that it is not so much term time but short term temp: and as such may not really allow for ancilliary services to be accessed.  We may enquire again, but we cannot, for a range of reasons, completely change his GP to a different CCG.
    I have stressed, locally, the need for dysphagia check up/monitoring as we do have one or two concerns.
    And yes, ASLTIP have been suggested as a source.
    I hope I don't have to write to our MP as he seems particularly useless (worse than actually) but will do if necessary.
    Having looked at the NICE guidelines for under 25s with CP they are just vague enough on this subject to not really give me sufficient ammo...but I can try!
    It is interesting that they make this age distinction; presumably it is to be in line with EHCP process...but it is actually totally ridiculous when a)not all under 25s have an EHCP, even if their needs would definitely warrant it were they to be in the right sort of qualifying education and b)once young people reach the magic age of 18 or so, whatever their condition, they move out of paed. services and into the black hole of adults...EHCP or not.

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