A letter was sent out from the learning disability service stating it was closing due to coronavirus. It was sent to my son who can’t read or write telling him his professional will contact him. Of course, who that might be, is also a mystery, as this Nhs trust service has denied him service for a period of way over 3 years despite him ‘being on their books’. This has been ongoing even with services by the way…for his entire time ‘on the books’.
He has had no proper review of his medication for a long period. Contact being negative in denying him full continuing healthcare at a meeting where professionals who didn’t know him made the decision ‘not to allow’ and not on the basis of qualifying criteria either, but on the basis of ‘not wanting to fund’.
It was a wrongful decision which they wouldn’t allow my challenge.
The social worker at the time did put in a half soaked challenge that wouldn’t have got anywhere. However, I never received the reasons or the decision from the Nhs at the time and found myself totally ignored when asking for it. I wasn’t allowed to challenge the decision myself either. The decision was only given verbally to me and without any proper explanations, as to how it had come about.
They had also delayed it, by over a year, and had messed me around conducting several meetings regarding CHC funding which came to nothing. The situation left me and my son in the lurch, without adequate funding and, even when some agreed funding came through, it was inadequate and underfunded. Allowing only £9.00 an hour for me to arrange some night care. It still remains the same and it is now a few pence off minimum wage and it’s only for 1 carer. When my son needs 2:1 care, 24 hours a day.
It took 2 years and 10 months for the Nhs to arrange and agree on anything at all.
Since the coronavirus and all the restrictions started, not one professional including all the newbies allocated at my son’s 117 meeting, at the beginning of March, have been in touch or in phone contact.
My son is on 117 aftercare. He lives at home where he has personally been restricted to very similar restrictions to what the Government restrictions are right now. As in all his care was forced to take place at home since January 2013 because specialist health and social care services were deemed not to be able to manage.
At the same time also in 2013…his care was cut to 2/3 hours a day, after a local authority assessment and whilst he was at home 24/7. An injustice that was only overturned in 2014. However, some of that injustice was never to be overturned as the local authority decided they would make it their task to prevent this…by giving factually incorrect statements to the Ombudsman…which she decided to use in decision making.
My son’s seizures were detected as temporal lobe epilepsy via M.R.I. scan in 2004, but were deemed by the local authority as being ‘ his seizures are behavioual and not part of his epilepsy’.
I definitely took the issue up with the ombudsman whose answer was ‘it wasn’t them that said it’ but however it was ‘them’ who used it in the statement as ‘findings’ in their decision making. Leaving me with the only way of challenging in the form of judicial review, at my own expense. One I couldn’t afford and they full well knew it.
I also took issue when the new social worker allocation suggested ‘an assessment’ by her, at the recent 117 meeting. The issue is, that her department had issued this statement to an ombudsman. It was also confirmed at that very same meeting by a clinician that it was not correct to say my son’s seizures are behavioural and not part of his epilepsy.
So now the situation is if my son needs any help…go to the local authority. Not very reassuring to say the least.
I have noticed, the first to be affected by closures are the learning disability service. Those are the most vulnerable in society and are left without help or proper service and it has been exposed that a number of health authorities three services (in Somerset, Derbyshire and East Sussex) where GPs have contacted teams to say that they have deemed people with learning disability and should ALL be DNR. No consultation with families, no best interests.
This is the level of the situation apparently.
Those who are caring for someone with learning disabilities and/or autism should be worried. Yet who have we got to turn to…social services? Who also lack resources OR qualifications in the health needs of people like my son.
Also, thank you to the government for not shielding him or allowing any special consideration to the help that may be needed at some point.
My son is 34 years old and has diabetes in addition to his complex disabilities and we have to take risks to get food. Even though he barely leaves the house…it is others who have to join the long queues to get essentials placing the risk of bringing the virus back.
I have diabetes which often goes low…If I became ill who would look after him? And I remember in 2017 a social services manager telling…I could easily be replaced. Not actually so, in reality.
Then again, it’s no use worrying about what might happen. I can’t see the local authority caring less or the Nhs by the way they are closing services for people with a learning disability and signposting them to services who make it up as they go along.
And a big thumbs down to all the Nhs staff who have let my son down for 34 years…and also I massive finger that is pointing in their direction. If as it has been mentioned they are going to decide who to ventilate and who not to…it can be certain people with learning disabilities will be the first to fall victim of Nhs ‘decisions’.
How many will be clapping then I wonder?