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[Londonbound]

I had a long talk with yet another useless helper who is supposed to be sorting out my issues.

I am an unpaid carer with long term health issues looking after my wife with multiple health issues, also looking after a few others.

Majority of my carees have mental health issues, solution that they should pay for private therapy, min £40 an hour.

Barely have 2 sticks to rub together so £40 an hour, that's food and heating.

Tried a few charitys but long waiting lists and therapy , talking does not resolve issues.

What my carees need is more support, help around the house, friends, a good social network, proper mental health help, help with going out, shopping or attending appointments.

Other issues were mentioned transport, that they should get a taxi, again money issues.

To get a taxi to the supermarket , it's over £20, perhaps if 2 or 3 share that might be a solution.

To go anywhere, doctors or the hospital its 2 bus journeys, plus a walk for a 10 minute appointment, then 2 bus journey's home.

Our disabled transport scheme went a long time again, not much to replace it.

This woman clearly has her head in the clouds has little idea of disability and financial issues.

This lady who works for the NHS should be providing actual good solutions but it just seem to be if you want more help pay for it.

Trouble is no one can afford it.

[Denis_1610]

Hello, Londonbound. I am afraid I don't think I have an answer to your immediate problems, but maybe I can make a few points of interest generally to readers of this forum.

Given your suggested distance and transport (or lack thereof) to the supermarket or doctors', I have the feeling that you live in a rural occasion, though I have little idea where.

I live in a village, a few miles from the nearest town. Our choice to live there was based more on practical aspects than on perceived attractiveness of the area. Affordability of property played a big part at the time.

Village life does have a few points in its favour. But there are plenty of negatives. We need to go into town to visit a decent sized supermarket. We do have a doctors' surgery but it is only a sub-branch of one four miles away, which we frequently need to visit for more-specialised services. There is little in the way of night life apart from a couple of pubs. There are no clubs or similar organistaions. Buses are one per hour into town and they stop completely at 8:00 pm. Nothing on Sundays.

When I next move I want to move to a big town. Where there are plenty of supermarkets and other shops close to hand. Where a taxi ride to the supermarket / surgery / hospital costs nowhere near £20. Where I can get home from the cinema on a single bus as late as 11:00 pm if need be. Where there is a railway station. Where there are plenty of social facilities. Where there are amenities for the disabled.

I am fortunately still in quite good health and a car owner, and can cope with the status quo. However I must recognise that the time may come when this is no longer the case. If I should need to give up the car I want good transport facilities. If I should need to move into sheltered accommodation or a retirement home, I would wish this to be placed where there is easy and inexpensive access to key parts of town.

I cannot make this change overnight of course and I don't expect others to. But we all need to have some plan or objective of where we need to go, even though the process of getting there will take time.

[Londonbound]

As i have explained before majority of my carees were born disabled in the forty's/fifty's, many ended up in institutions as the parents couldn't cope.

Was it Thatcher decided to close the institutions and everyone disabled live a normal life, to have your own front door, live how you want, come home when you want.

A lovely specialised housing estate was built specially designed for the above, flats with wheelchair access, no steps, wider doorways, specialist bathrooms.

AND loads and loads of help on hand.

Which government was it that decided to cut the massive disabled budget, they are costing too much money.

They cut the independent Living Fund as well which allowed people to live independently.

Many who just could not cope with the massive reduced level of support ended up back in care, giving up their own accommodation etc.
All the charity's that used to help, their budgets were cut and they folded , the lovely staff were made redundant and had to travel elsewhere for work, these were friends as well as support workers.

So we have a lovely specialised housing estate but with Zero help and support.

There used to be help with shopping, but CUT suggested you order shopping over the internet, but how about the social aspect, going out around the supermarket, meeting people interacting with people, ALL Gone.

I have a car, I can go anywhere, supermarket, doctors, hospital No problem but many of my carees can't drive, can't afford a car etc and were heavily reliant on the Disabled transport charity's.

So we live in specialist adapted accommodation but away from the supermarkets, doctors and hospital which of course are vital for disabled people , to try and move impossible.

There was another sheltered housing complex built for the severely disabled, right next to an industrial estate, no shops, no doctors no nothing, land was cheap? Again the same problems transport to get anywhere, get a taxi.

The answer is to reinstate the high level of support that is needed but I don't think that will ever happen, too expensive.

But these people did not choose to be born disabled and need the right level of support.

These are chronic long term medical conditions, cerebral palsy, spina bifada, learning difficulty's, the NHS should be helping a team of people?, a co ordinated package of support?

The Care Act should have helped to provide more help and help for the unpaid carers but the councils just were not given the money, massive budget cuts, cutting services not providing more services.

But again to qualify for help you have to be very disabled and then just qualify for a basic package of care, no emergency help and no night care, what do the majority of disabled need? night care.

My carees are depressed, lonely, having a lot of issues with their disability's, lack of medical help, lack of equipment, long waiting lists for anything.

And the Corona, Covid 19, none have received any kind of support, practical support, mental health support to deal with the extra anxiety.

One positive note, the council have built a lovely Extra Care housing facility, care and help on site, and situated near the shops , but this filled up immediately, there is a need for many more of these, but again costs a lot of money.

[Maine]

Hiya Londonbound, It's not just practical help it's also health care that's completely lacking..even when someone like my son is on aftercare....I'm busy logging the avoidance services are using.

The latest.

So another week of many with no significant changes in the attitude of a learning disabilities team ignoring that my son is having numerous seizures both day and night.

His allocated consultant has had the chance to view recent videos to review him, but he hasn’t even bothered to acknowledge my email containing the videos.

It is deplorable that someone allocated to my son’s case and collecting a substantial wage from the NHS trust he works for could be allowed to ignore my son and his seizures for almost a year and do absolutely nothing to assist medically with any medication to help alleviate the distress these particular type of seizures are causing to my son who is a man of 35 with learning disabilities and autism and who is a client.

This level of ignoring is also being overseen by an Acting Divisional Director of Nursing and Therapies who is well aware by having involved herself during most of the past year. No doubt her managers are also responsible and aware this is happening. She has confidently informed me that I can contact the Chief Executive of the service who she calls by his first name when she’s mentioned him.

You are of course welcome to contact Richard, please let me know if you would like his details.

However, she did not provide me with the Chief Executive's email address or details when she said she would do so. When I confirmed I would like these details I wrote my reply to her on 6th October 2020. She hasn’t provided them since then.

It is no use asking this Director to sort anything out as she replies in a parrot-like fashion to even the request to have the ignoring consultant changed with a continuous quote of various sorts:

That he will remain for consistency for my son.

THAT MEANS THE CONSULTANT WHO IGNORES WILL REMAIN CONSISTENT IN IGNORING MY SON’S NEEDS AND ALL WHILST BEING OVERSEEN CONTINUING TO AGGRAVATE BY HIS SOLID REFUSAL TO REMOVE THE INFORMATION HE WROTE IN CLINIC LETTERS WHICH HAS BEEN FLAGGED AS INAPPROPRIATE, OFFENSIVE, AND MISINFORMATION BY MYSELF. INFORMATION ON ONE OCCASION WHICH HE WROTE ENSURING WOULDN’T BE CIRCULATED AND, IT WAS IN ITS UNCHANGED VERSION. SO I ASSUME CONSISTENCY CONSISTS OF A CONTINUATION AS IT HAS SO FAR BEEN A CONSISTENT SITUATION OF MISINFORMATION BEING WRITTEN IN CONTRAST TO WHAT I HAVE SAID TO HIM OR ANYTHING I DO SAY TO HIM,
It all went wrong the minute he was actually allocated to my son’s case and from the very first attendance, he made to a 117 annual meeting.

Once everybody at this multi-agency meeting had been introduced a minute/ note-taker also walked in and sat at the meeting. Later it was found this person was a Business Support Manager.

She informed me that :

She attended the meeting to take minutes, the notes she made for the meeting informed the consultant’s clinic letter, this clinic letter is the only minutes of the meeting.

MY QUESTION HAS BEEN SHOULD A RANDOM BUSINESS SUPPORT MANAGER CONTRIBUTE TO A CONSULTANT’S CLINIC LETTER REGARDING A CLIENT WHEN SHE ISN’T EVEN PART OF THE COMMUNITY TEAM FOR MY SON. IS IT EVEN ETHICAL PRACTICE FOR HER TO HAVE PRODUCED NOTES AND WITHOUT INFORMING ME OR EVEN GIVING ME THE CHANCE TO COMMENT. GIVEN THEM TO A CONSULTANT THAT HAD NEVER EVER HAD ANY CLINICAL OR OTHERWISE CONTACT WITH MY SON BEFORE EVEN. SO HE COULD USE THOSE MINUTES/NOTES AND CONCOCT A CLINIC LETTER WHICH HE WOULD LATER ALLOW TO BE CIRCULATED TO ANOTHER ORGANISATION (NON- HEALTH) THE CLINIC LETTER CONTAINED MEDICATION NOTIFICATION AND HIS DIAGNOSIS AS WELL AS PERSONAL DETAILS CONCERNING MY DECEASED MOTHER (SHE HAD DIED 38 YEARS AGO). INCLUDING LOGGING IN MY SON’S HEALTH FILES MY MOTHERS SPECIFIC FEMALE CANCER.
She cannot provide any further information and again would request that you direct all further inquiries to Acting Divisional Director of Nursing and Therapies or my son’s clinical team who will be able to support.

SO SHE WAS THEN AFTER TELLING ME THE ABOVE DIRECTING ME TO THE CONSULTANT AND THE ACTING DIVISIONAL DIRECTOR OF NURSING AND THERAPIES WHO ARE CURRENTLY WORKING SIDE BY SIDE TO IGNORE AND OBSTRUCT TREATMENT FOR MY SON AND IN DOING THAT ARE ACTING TO DELAY HIS HEALTH CARE NEEDS BY THE IGNORING PROCESS.
The ignoring process is part of the consistency. It is used at all times I request support for my son from the community team and they now expect to leave it as it is as a point of contact. While my son has endless amounts of seizures during the day and night.

He is not on a therapeutic amount of medication so he’s in major distress while he has these seizures causing hallucinations on a very daily and nightly regular basis. For example, he was thrashing around all night from midnight to 5 am early yesterday morning. He was too frantic to be calmed and too noise-sensitive (noise-sensitive from seizure activity in the temporal lobes).

By the time myself and a P.A. managed to enter his room safely he was soaking wet from sweating as he had been so distressed. He had to be changed, his bedding and he was hyperventilating. He had been terrified by seizure activity and was still shaking severely. He was also exhausted as was both the P.A. and myself dealing with this all night.

One person couldn’t possibly cope with that alone. In this case, one person is paid and the other is not.

The thing is, maybe it could have been easier if the consultant had reviewed his client during last week and offered some kind of help while there is an endless wait for neurology. What only appears to be on offer is a virtual review and that was the week before with me and I am not my son the client. Besides, every time I personally have accommodated a review, my words have been twisted by the consultant. Which in turn has left my son without proper treatment and incorrect guidance, of his medical presentation which is then placed, in writing, within my son’s medical file. In order to keep in tune with the last ones which are also incorrect. It has been going on for years. However, this is this new consultant’s first objective, way in front of my son’s medical treatment.

What the learning disabilities service needs to understand is that due their negligent lack of commitment towards my son’s medical care that they are depriving my son of his liberties. They are failing to treat my son’s epilepsy and failing to ensure he’s not experiencing the distress he is being left with through their failings to acknowledge it and negligent ongoing ignorance (Which incidentally is extremely abusive)

They need to understand it is not acceptable to falsify his presentation by concocting false accounts of it only serving as being useful to uphold a massive amount of wrongdoing on their part. They need to stop using my son’s lack of capacity to secretly write lies about him and hide it within health files they aren’t allowing me to view as his mother and lifelong carer.

This organisation is not working with me and fully expects me to provide them with information and in return full information is being withheld by them. They aren’t allowed to do that and they should be open and honest. It is obvious they aren’t being and don’t intend to be either.

Then I found out this:

After emailing the consultant (who I had been told I had to contact if my son needs assistance: note son also on 117 aftercare) This is also the allocated consultant and ‘ health team’

Who blacklisted my contact with him (not my choice to contact him)

The sender IP Address is blacklisted. (in
reply to RCPT TO command)

THEY NEED TO SORT THEIR CONSULTANT OUT AS BEING FIT FOR HIS JOB. TO ADD TO THIS THE ACTING DIVISIONAL DIRECTOR OF NURSING AND THERAPIES HAD ALSO BLACKLISTED CONTACT BY EXACTLY THE SAME METHOD.
Their actions confirm all I have said so far.
The evidence is their problem now.

[Londonbound]

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.

[bowlingbun]

It's all a mess.
There might be a charity who can help with a wheelchair.
Either locally, the Lions or Rotary, or the Florence Nightingale Aid in Sickness.