How much NHS treatment do you get?

Sam_Toucan

When our son was diagnosed at 2 months of age, the neurologist said it was good to find out so early as that allowed us to start working with him right away.

That was 4 months ago and since then very little has happened. Despite lots of pushing we've had maybe 4 physio appointments, seen the SLT for feeding problems 3 or 4 times, had a "get to know you" appointment with the full community health team... and that's about it.

At the comunity health team meeting they said that we could get from them whatever therapy we needed. So I asked for a weekly physio session and they said they don't do that, how about a single appointment in 3 weeks time?

We have no dietician support, no OT, no community nurse. He doesn't feed well and I've no idea whether he is taking enough or not. So we took him to A&E and got him a feeding tube - however with better support perhaps he wouldn't have needed it?

And now the feeding tube became blocked this morning, after several frustrated calls to our community support team it looks like we're back to A&E to get it fixed. The medication which blocked it comes in liquid form which has no risk of blockage, however this is more expensive so they gave us dissolvable tablets instead.

Is this the same experience as everyone else? I was expecting much better than this.

Sam

mollymoobarnes

Oh hon, it sucks doesn't it? My experience hasn't been much better in some respects. Tom has quad CP and gets physio once every 2 weeks if we're really lucky and once every 6 weeks if we're not. He started mainstream playgroup in January and we've still not had the physio come in to do any training for the staff on handling or lifting safely, or on giving guidance as to how they can best support Tom to play effectively. I had to fight to get Tom some AFO's although he clearly needed them. We have a walker he HATES that has been sitting in the playroom for a year and the physio has only just accepted that it's not because he doesn't want to walk but more because he hates the walker and we need to look at other options. Our OT does joint appointments with the physio so we actually only get half the time with each professional which strikes me as a great idea for them and a terrible one for us. We've just (he's 3 now) got some advice about feeding equipment (cups etc) from the OT. Up until now I've muddled through on my own. We do have a great SALT as Tom has feeding issues too and we have just recently seen a dietician (the first time since he was a baby) and got some high cal milkshakes which will come in really handy. We've had great support from our FIRST team who help co-ordinate starting in mainstream education (playgroups and school) for children with disabilities. We never see the community specialist nurses so we're not sure what they actually do. I've spent a fortune on equipment that we needed but have either been told we can't have or that we know we would have waited 6 months to get on the NHS. I do 9 hours a week of conductive education with him as the NHS provision of physio is so poor. I feel dismayed that they do so little to help prevent problems occuring and then when they inevitably do they are really quick to suggest Baclofen, Botox, surgery etc. Why not give us the help we need before things get bad? I'm sure it would be cheaper in the long run and certainly better for our children!

I think the key is to SHOUT! Make a pain of yourself and constantly bombard them with phonecalls until they give up and give you what you want. I'm rubbish at this to be honest - it's so not me but I think I'm going to have to get better at it.

How's everyone else finding local provision of services?

Maria xxx

Toby1

Hi Sam
Toby is the same age as your little one. He suffered a birth trauma which should not have happened ( he was stuck for a very long time). Due to this the trust ensured we have had as much support as needed. The scope lady who came to visit was amazed at the help we have had which I know is the trust trying to keep us happy and make up for an error. Anyway he had physio daily while in hospital, it was 1 each month until recently and now 1 every 2 weeks. We have an excellent paed and she is pushing for twice weekly. We have had SALT team for about 3 months. She contacts me every couple of weeks and is organising a swallow assessment. Toby pools some milk at the back of his nasal passage making him sound congested which also makes him cough sometimes. He does not have a tube though and manages without thickened formula. We have recently been involved with a dietician and our health visitor is organising a meeting with all other professionals next month. We are also attending a feeding clinic with the paed and SALT team. We get extra visits from health visitor but have had no contact with any community nurses.
It is very stressful and such a worry.
I know several people who have been on the physio waiting list for years! Its shocking. Our paed was shocked that we were only getting physio once a month so I am greatful to her.

Tracey x

Ikeysmum

I had to make a formal complaint and request to change consultants to another hospital. To do this you have to give your gp concise reasons why you are unhappy with provision, then get him to agree. If he does he can refer you to a consultant/place of your choice.
We kept saying to healthcare professionals that there was something wrong with Isaac but it wasn't till he was 2 that he was diagnosed. The first consultant was appalling. She said he needed a brain scan and 6 months later we still didn't even have an appointment. then there were massive inaccuracies in her reports, saying things like, he alternates legs on stairs. She'd never seen him on stairs and he had barely begun to even walk at the time! Anyway I could give you a list as long as my arm of mistakes and we got no help or support, like you say 3 monthly physio appts and motor skills groups that were constantly cancelled. Anyway after I made the complaint and put it all in writing, we moved his care to a children's hospital. Its a lot further away (hours drive) but now he gets amazing care from a very talented consultant. This consultant organised the physios etc near us, and he gets a lot more support. He got a scan within a month, and bladder and bowel scans too that he needed. His mainstream school even do daily physio on him. (we also do it in the evenings) He has Piedro footwear and a major buggy for when he can't physically walk, as most of the time he can, but he has these strange boughts of 2-3 weeks at a time when he can't really walk at all.

In fact someone else told me that you can also ask for a second opinion, see your GP and ask them to refer you to a person of your choice.
I hope you get it sorted.
lots love
xxxxx

maryholmes

All I can say is its all a lot better than what my son gets, we are lucky if Physio come once every two months and she just measures him in standing frame after the OT has done her messing around, then both go. They didn't even realise his needs due to this and I have nagged and nagged and slowly improving but still rubbish, we have complaint against Leeds hospitals for his birth and care its that bad, I'm heavily pregnant with my second and the amount of lifting, holding and carrying I have to do is physically hard as he extends a lot and has dystonic cp, our health professionals are beyond a joke

thara

My daughter Abby is 1 year old. Her neurologist said it would be best to start therapies very early as well. All of Abby's therapists come to us from Utah's Early Intervention scheme. She has a physio, OT, vision and a SALT.

We also do tickling/bouncing *therapy*.

Regarding the feeding tube, Abby doesnt need one as she can swallow- woohoo. However, when Abby was in the NICU, she had one, as no one knew if she could swallow properly or not.

Sam, your experience doesnt tally with mine, in any way. All of Abby's therapists are sappy baby loving people.

*The last two are things I do with Abby at home when we have time to spare*. She LOVES them.