Can I relly on the NHS? — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Can I relly on the NHS?

drbrunel
drbrunel Member Posts: 16 Connected
THose of you that have read my post dated a view days ago will know the horror that we are going through. The same horror that I know a lot of have or are currently going through as well..

My baby boy has had grave 4 bi-lateral ventricular bleads as well as a small stroke...

He is 1 month corrected age and currently doing very well...Lifting his head, moving left and right, feeding and starting to smile

He is unfortunately high risk of developing some form of cerebal palsy or associated dissabilities.. I obviously want to o whatever I can to prevent all of this happening so are doing as much as the intervention therapy as I can

What I wanted to simply ask, is can I rely on the NHS (long story but they created the mess we are in and are taking legal action) I do have private healthcare for my entire family so is this a viable route I can go down

Comments

  • b8s
    b8s Member Posts: 33
    My family has been in the 'system' for two years now and it has become very obvious that care is inconsistent. Some of our consultants and therapists go above and beyond expectations, whilst others we have had to fight to get changed. So to answer your question, it will very much depend on how vigilant you are and how quick you are to question anything you do not agree with. If you do not have confidence in the person you are dealing with I would seriously consider other options. Hope this helps, I just wish I had known sooner that we had choices.
  • renacahill
    renacahill Member Posts: 145
    On a physical level make sure you have physio involved. They can spot problems early on and will advise re positioning, handling etc. This should be put in place via paediatrician which he should certainly be under.
    Mentally stimulate him at the age appropriate level and look for reaching, eye tracking, focusing, concentration, moving head etc. Tummy time is vital for CP (and other) babies.
    Provided there is no contraindication ensure maximum nutritional intake. look into fish oils (good for brains!) good vit intake, breastfeeding if poss as the bf milk contains everything and apparently stem cells! Also LO must be on iron syrup as prems and low birth weights can get anaemic easily.
    Regarding NHS care, from personal experience it has been exemplary. Physio and OT from day one (coming to our house as DGS did not like the dept) hydrotherapy, sensory room, SALT, dietician, portage. Specialist equipment and shoes etc. And DGS only 22months old still
    All I can say is the input has been fantastic from the NHS but has also needed a lot of input of mum, dad and me (nana) but the results have been worth it as DGS is showing improvement week on week and we are cautiously hopeful for the future.

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.