The Health care the NHS as well is not much good to put it nicely.
One of my carees has fibromyalgia, very painful long term chronic condition, diagnosed and never saw the consultant again as “there is nothing they can do”
How about pain management, we have a pain management clinic in the same hospital, nope no referral.
And how about the devastating effects, the lack of sleep, the unable to walk more than 10 metres without pain, the depression.
And help with benefits nope nothing to do with the hospital, luckily a lovely GP wrote a good report to the benefits and was awarded DLA.
Refused an NHS wheelchair, but how can someone in pain propel themselves along? they can’t.
We live on a hill, can go down the hill very fast in a manual wheelchair but getting back up, my caree just can’t propel herself up a big hill.
An electric wheelchair refused as my caree can walk, we only give electric wheelchairs to people who can’t walk.
If you can’t walk how do you get to the assessment appointment, you need a wheelchair to get a wheelchair.
An electric wheelchair would give so much independence, being able to go around the shops without needing a helper, to just get out of the house, feel the sun on your face, the wind in your hair.
To go out for the the day without needing a helper, to be able to take your dog for a walk to the park independently without relying on someone else.
But refused, buy one yourself, they cost thousands of pounds and how can you pay that with no savings.?
And trying to get help from mental health services, many of my carees suffer chronic long term conditions, you do get depressed dealing with illness all the time, the constant battle trying to get help.
Off the record one of my carees was told to chuck herself in the local pond, and you might get some help dearie.
We do have a team of mental health workers who can visit and provide support, pull a few strings, open a few doors.
Nope my carees do not qualify for any help from the mental health services.
Constant battles with the benefits, assessments, 20 miles away, if you can barely walk, how do you get to the assessment 20 miles away?
And telling some total stranger all your issues, they decide whether you get the benefits or not, you wait for weeks for the decision, you get refused, you have to appeal, hours of paperwork (no help provided).
You go to the tribunal (no help provided) and manage to win your case, until the next time.
My carees should have a team of helpers, a care co Ordinator, help going out, help around the home, majority have nothing.
They are just left to suffer and it is only from the help of unpaid carers they can have any kind of life, i go around and help, a chat when someone is down, i get them shopping, help with practical support.
Some of my carees can barely get out of bed, in so much pain can barely do anything, how can they maintain a home, cook nice meals for themselves, go out and enjoy themselves for the day, they can’t.
Only with lots of help from unpaid carers who majority are ill themselves and fighting to get proper treatment help and support.
I suffer from mental health issues and i am an unpaid carer, surely that should tick some boxes for help and support, nope not entitled.
Advocacy nope not entitled to advocacy, but surely i am through the Care Act?
I don’t get carers allowance, but every day i am using my money, giving a lift to the doctors or hospital, helping buy the odd thing when someone has no money.
I am caring all the time but don’t get carers allowance, very unfair.