Do you ever get the feeling you are getting left behind a little? Abandoned perhaps? 

I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless. 

When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened. 

I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May. 

Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.

Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?

You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?

I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.

Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house. 

Sincerely pissed off with the NHS. Sort. It. Out.


Anonymous said…
Sadly this is the way of the world ( I have wrinkles from it). I have a 23 year old with CP and I echo your experience when it's good it's great but fighting the rest of your time is so exhausting. My son had OT provision on his statement for years never got it due to no OT's. Etc etc

The services and the fact that they diminish is historical. Many youngsters didn't survive past five let alone adulthood but that has all changed now but the services haven't. Also the NHS work to the medical model of disability rather than the social. i.e. Cure the disability.....not going to happen!

Saying that my son has been in hospital this year, first time in years, and the attitude of the medical staff was somethings change for the better!
Jo said…

Had to comment - am going through similar circs as you re the NHS. My Daughter is 4 and starts school in Sept, she has hemilegia and is not standing or walking yet.
Anyway, decided to start private physio weekly over the summer, using her DLA money that we have been squirrelling away for her and it's v early days but feel hopeful they will help her a lot more than the NHS has with their patchy and limited services.
One thing the therapist said was to ensure in her statement it says to have physio and OT input weekly as apparently they are deliberately vague and don't put specifics in there, so I am going to appeal my Daughter's statement on this basis and hopefully she will get more regular input. She also said if the panel agree this is how it should be worded then they have to provide this legally, even if they have to outsource this to private companies.
Hope this makes sense as haven't read it back! And thank you for writing your blog, it has been a huge help to me especially in the early days. Keep fighting x
Nora said…
It sounds as if NHS truly is like "Universal Health Care" in Ontario. I remember having fights like this when our son was going to school. It was like suddenly his speech was good enough-a magical cure! And medically fragile?-not if he could go to school! A Miracle!
Linzi Price said…
Thank you for the comments. I wish it wasn't the case that unfortunately the fight is wide spread with a dash of positive experience here and there.

As for the statement yes try and get it written in and quantified we had that fight to see my posts on statements and even then we still didn't get what we would love which would be physio and salt twice a week. Ha as if. Anyway keep fighting and keep battling. Glad this blog helps. Will start putting some vlogs on soon about our blended diet feeding regime.
Anonymous said…
A friend's daughter's therapist left and wasn't replaced - but because weekly therapy was specified in part 3 of her statement it had to be provided by law. After many letters to the school, NHS and local MP a new therapist was employed and the sessions resumed, and they also received money to cover the 6-12 months she'd been without so that they could pay for a therapist to visit at home to make up for the loss of provision. It's definitely worth continuing to fight!
Good luck!

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