loss of medical care

Hi Im new here - I am a carer of a 28 yro with EDS, fibromyalgia and autism and in recent months following his EDS diagnosis he's now lost all medical care and social care.

Can anyone advise any way forward?

[Jay66]

Are you a parent to the 28yo? Which country are you in? Can you say why the 28yo has lost the medical and social care (what process took place)?

[Hidden in reply to Jay66]

Hi Jay thanks for replying - Im in England. Norfolk to be precise. He's my son and Im his sole unpaid carer.

Long story short he had a series of falls (130) in his own home which his GP refused to treat resulting in traumatic injury to his shoulder, chest and spine leaving him bed bound. I was urged by Social services to put a complaint into NHS England which was upheld and the GP retaliated by deregistering him. He subsequently put a note on my son's medical records following that investigation that my son was "inappropriately requesting medication" (AKA was a drug addict) despite being diagnosed with an allergy to all opiates. This has been verified and debunked but now social services say that because he has no GP they no longer have a duty of care to support him as he has "health needs' not social care needs. He was assessed for a Care Budget in 2016 but they have so far failed to complete it. Yes its a breach of the care act and no I can't get any support to fight it.

[Jay66 in reply to Hidden]

I won't be able to advise you - these are all beyond my experience, but you need to register with a different GP. Most people with EDS are on permanent strong painkillers, and continuity is vital to avoid both the pain of the condition plus the pain of withdrawal. I know there are problems with GP numbers in Norfolk, but if you have been deregistered by a GP then NHS England's area team will find you another GP.

nhs.uk/chq/Pages/2556.aspx?...

[Hidden in reply to Jay66]

Thank you Jay - Ive been trying. NHS England say that they no longer have responsibility and referred me to the CCG. The CCG say they don't have responsibility and have referred me back to NHS England. I cannot put in complaints as noone will allow me to make one. The Practices in the area refuse registration on the grounds of "geographical location" as we are too rural and my son needs home visit support.

My son has endured two forced withdrawals because he cannot get a GP which has left him with neurological injuries.

[Jay66]

Have you approached the Parliamentary and Health Service Ombudsman? Your situation sounds awful for you.

[Hidden in reply to Jay66]

Thank you Jay - it is - but I'm the carer, its my son who is suffering the most. The Parliamentary Ombudsman is my next step after Easter. I was hoping to avoid a protracted legal battle but it looks like thats our only recourse now.

[Jay66 in reply to Hidden]

I hope that it is the avenue which brings you success - it can sometimes be the catalyst to 'get things moving'. You don't need any legal representation to go to the Ombudsman - the service is designed to allow ordinary people (who have already jumped through every hoop going) to get redress for their complaints, which it sounds like you have every right to get.

[Hidden in reply to Jay66]

Thank You Jay.

[cyberbarn]

It sounds like you need some independent advice here. Have you been to the Citizens Advice Bureau? They can help patients that have been deregistered from their GP surgery.

And have you explored all options with PALS and your local Healthwatch? Our local Healthwatch has links with a organisation that can help support people when they have a complaint against the NHS.

Also I would suggest, if you haven't already, calling The Patient Association. They have a helpline that can help in things like this:

patients-association.org.uk/

I am surprised the CCG hasn't arranged for another practice to take your son, because if they don't they are leaving open a legal case against themselves and the NHS.

Although practices can refuse to register a patient due to violence, they can't refuse to register a patient due to medical condition, so they really should be taking your son back on the list, and if not then it is the duty of the CCG to find you another GP.

Good luck with it all. My son is 21, Autism, EDS and chronic fatigue, and we ended up changing GPs because we were getting no where with our last one. We are in a rural area but luckily we have a choice of two different towns to go to for GP services.

[Hidden in reply to cyberbarn]

Hello Cyberbarn - yes Healthwatch have been trying for 2 months but say they've now exhausted all avenues and can do no more. SEAP have no representation in this area. I have been looking for clear "rights" and there seems to be no consensus any more as to what rights patients have? The CCG have made it clear they have NO responsibility in this issue - we're being "ping-ponged" between NHS England and the CCG. My son was never violent - he never has been - just to make it clear. He's just ill and injured.

There's no CAB here any more and I can't travel to Norwich to access the one there.

I will try the Patients Association again thank you.

[BJ_UK]

Have you tried contacting your local MP and your local councillor? One or both of them might be able to apply pressure where it is needed.

[Hidden in reply to BJ_UK]

Thank you for your suggestion BJ. Yes. No reply.

[Steenygirl1 in reply to BJ_UK]

I would also suggest local MP. I have suggested it to others for health issues like this through my work and it was helpful

[JanWellcome]

Have you spoken to EDS support can they help

ehlers-danlos.org/

Jx

[Hidden]

Hello Jan - yes I have. They were very kind but are unable to help in this case. They've recommended a solicitor though that I will try and contact after Easter. However there is no guarantee of legal aid for cases such as these according to the Disability Law Service.

[Hidden in reply to Hidden]

Follow up - the Solicitor says they only support children with EDS/CJHMS. Back to the drawing board...

[Jay66 in reply to Hidden]

Try the Ombudsman route now - it sounds like you have exhausted most other avenues.

[Hidden in reply to Jay66]

Thanks Jay - Ive begun that process