Those of you happy with their Salt and other NHS therapists, could you please help me in describing how good therapy looks - have complained and need some info

[babiki]

Hello ladies, I have complained about our local children's services regarding my ds, who will be 3 in November. I'm not British so actually don't know what could a good Salt do with a significantly delayed almost 3 year old: so far they finally offered OT, who should visit his preschool in September once in 2 weeks, still refuse to give in regarding physio and hydrotherapy altough DS started to walk recently - poor balance, wide gait, can't do the stairs and get off objects ( chair )... Salt consists of nursery nurse coming home trying to do play therapy- ds usually runs around throwing all her toys around. He has about 20 words - but uses most often about 10. In another country where I am from physio and hydrotherapy would be once- twice a week, plus specialist feeding OT, plus proper Salt ( not Early Support nursery nurse). What input do your children get in the 'good' NHS areas? Having meeting with the managers and Salt- who just sends cut out games that we have been doing at home anyway - need help to tell them what they could be doing. Many thanks.

DD (4, autism and s&l delay). we do not have much OT input. our salt is fortnightly for 1h and we see a SALT who is very specialised; she works mainly with children with autism and clearly knows her stuff.

before that, we attended group therapy sessions with some salt assistants who had no clue about how to engage DD. we also complained got referred to our current pretty fantastic SALT.

Did the diagnosis of significant delay come from NHS SALT?

My experience of NHS SALT provision here in the UK is that it is rather poor, for developmental problems anyway. I think there is simply not enough to go round and lots of this work is now being delegated to less highly trained staff e.g. nursery nurses.

By contrast, I have used an independent SALT. There was no comparison. She identified significant problems where NHS found 'no problems', spent 90 mins assessing in various different ways, changing the method of assessment to suit the results and digging deeper as she went along. By contrast the NHS SALT could not even identify when dd did not understand the instructions for exercises. Independent SALT came up with a raft of detailed recommendations and advice for what to do at home. Result was dd develope 18months-2 years of language in 9 months. This is no exaggeration.

Of course, the difference is you would need to pay for the service, but you could get a lot of very useful recommendations without having to pay for weekly or fortnightly therapy. We went for fortnightly therapy, it was costly, but without doubt the best money we ever spent on dd because by the time she went to reception she was ready, and therefore had a good reception year. The benefits of the private therapy have been massive.

If private therapy is an option for you, look at www.helpwithtalking.com but in the meantime, in your case I would be arguing that a nursery nurse is not highly trained enough to work with a child with significant delay and he should be working with a therapist. If he is able to sit and concentrate for short periods then a therapist should be doing this with him, and interacting with him rather than watching him run around with his toys(!)

HTH

Handywoman
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My ds is 2.2 and has CP. he can't walk, his language is at the late end of normal. (he has about 120 words, uses about 30 regularly has some 2 and 3 words sentences no communciation issues just lazy I think!)

From the NHS we have weekly physio, and OT who goes into nursery about monthly and a SLT referral (but no therapy yet)

From Early years foundation stage preschool funding they give the nuresery 25 hours paid for 1-1 to support DS in his ft nursery place.

No hydrotherapy or anything else.

That package is then supplemented by us with further weekly physio, private salt and weekly swimming out of DS DLA (and then some) to try and get a proper package for him.

Chocjunkie, new Salt sounds good - basically they are saying he is too small to do anything else with him, but I am convinced a good Salt would know ho to engage him! Handywoman, I did get private Salt but did not click with her- main advice was to speak only English with ds and that he will needs to go to special school... No luck with Salt for us so far... He was labeled with Global development delay as delayed in everything except for fine motor skills, plus feeding and sensory issues. Do Salt in here diagnose as well? Are there any tests the can do - as the one you described where they measure exactly his receptive and expressive delay?

Well it sounds like you have had bad luck with your private SALT, in my experience they can certainly measure exactly where he is at with receptive and expressive language, by how much he is delayed in each and there are a number of different tests to measure this whereas in my experience the NHS stick with only a standard test for all. A good SALT would also be able to identify what other communication issues there are ie social communication, eye contact, non verbal communication and would be able to engage your little one and build on his strengths and interests to progress his language with games and books. My dd was just 4yo when she started therapy but was able to engage for long enough to actually work on therapy, a good SALT should be able to do this with your son for short periods. As regards the bi-lingual aspect a good SALT should be able to advise where this fits in and how this may affect the result. Sounds as though you just need to find the right therapist, whether that's NHS or private. Definitely push for NHS to give better quality intervention from someone appropriately trained (SALT rather than nursery nurse). His age is not an excuse, you are absolutely right, a good therapist will be able to engage him. My private SALT was very talented at communicating well with dd. Not everyone has this talent, SALTs included but it is essential. Keep pushing til you get what you need.

HW
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There are some good NHS SALT feeding teams - but in our PCT you have to be referred by a paediatrician to access. The general SALT that we saw worked mainly on the communication side and did not deal specifically with feeding/swallowing - although some exercises were similar.
For speech alone, DS1 was referred at 2, but could not be assessed until 3. DS2 was the same, but DS3 who has feeding issues as well was seen before 3 - so it's not a hard and fast rule.
My feeling in the UK is that it is a bit of a lottery in each PCT. The services exist (potentially - even if an out of area referral), but it depends on the access route. You could be allocated to paediatrician A who is on the ball and refers to the right team. You could get referred to paediatrician B, who sends you to all different consultants, but you never get to the person/team that could help, or you could get paediatrician C, who plays the wait and see game and sees you at 6 monthly intervals but does precious little.
It never used to be in my nature, but now, if I don't receive an acceptable response, I follow everything up and question everything (in writing) and where I have to, I complain. It is sad, but this is the only way I have been able to progress my children's well being.

auntevil I agree to get anywhere in the NHS system with complex needs you have to constantly follow up and challenge everything, and often complain, again and again. It is uphill all the way!

HW x

Thanks for all your replies and suggestions. Everyonehasaprice can't believe child with CP has got no hydrotherapy :( and that you have tu supplement physio too. I have a juvenile arthritis and as a child spent my summers in spa clinics ( physio and OT programmes ) for free! In an ex communist country and it helped a lot, that's why I get so frustrated here as well. Auntevil, yes the system is very disjointed and varies greatly. I will tell Salt about the proper testing, they go on about ds having not good concentration, however with private psychologist - Aba tutor he is good, they know how to deal with him.

I can only compare the care my son's 1/2 bro got in E. Europe with the care my child recieved here in the UK as being like the stone age compared to Star Trek. Sadly the UK qualifies as the stone age nation when it comes to developmental disabilities - it's such a waste in terms of human potential but the political will to change things just isn't there.

The OT my son needs isn't available on the NHS full stop - so the hunt for private finance is a constant struggle. The same treatment would be standard routine practice in the parts of E. Europe I'm familiar with. Charities such as the Family fund, cerebra and Caudwell are a good place to start if you are serious about trying to help your child achieve "something/anything".

One other thing I will say about the UK generally - especially later on when your child gets to school. It's sadly only the kids whose parents are prepared to fight for it that get anything close to the chance to get a decent education. With this in mind do make sure you keep a paperwork trail of your child's progress - you wouldn't believe how handy it may be later on.

With regards salt specifically I would resign yourself to using a combination of private and your own personal interventions to help your child unless you live in the right area. It is a postcode lottery, mainly cos in many areas the few therapists there are have such huge caseloads they are too overwhelmed to do any regular direct therapy themselves so delegate to nursery assistants etc through sheer necessity.