Help for the bedbound and severe

[justy]

Hi all, I am looking for practical suggestions only on how to help the severely and very severely affected, those who cannot advocate for themselves as they are too ill, who cannot take care of their own daily living needs.

What practical help and support is available to them? especially if they have NO family or friends to look out for them and are forced to live alone.

I am especially hoping to have contact with anyone in the UK who is in this postiton or who cares for someone in this position. I know that daily living assesments can be done by social services, but how is this set up if the person themselves cannot do it? Will contacting social services only lead them into more trouble ie not being believed etc.

Does anyone have any experience of organisations or charities or advocacy groups who can help to put a package together?

It is shocking that people can be left in this state with no medical care for their illness but I know it is not uncommen in the UK if you have very severe M.E.

Why don't our charities for M.E have schemes to help people - MS sufferers get help from their charities with clinics for Oxygen therapy and home visits and befriending schemes, as do the mentally ill. Why do our orgs not do more of this kind of work?

Any suggestions or help gratefully received - but please no treatment suggestions - we are talking about people who have to be in darkened rooms all day and night with no money beyond small benefits given by govt to live on, who will not be able to have a 'correct' diet because they are lucky if they can eat at all.

Cheers,
Justy.

 

[brenda]

Hi Just

I have been in this unfortunate position myself due to relapse.

I contacted social services and was assessed at home and granted a home help coming in to shop, clean, iron, cook and wash my hair for me. I stipulated that perfumes were not to be worn and they complied. I had a lovely young woman but if she was off work, it was a bind to have to explain things to someone new.

After year l improved and stopped the service gradually and would not hesitate to get help again though it is better psychologically to be independent. My various GPs have been reasonably supportive.

 

[justy]

Thank you @brenda for telling me about your own experiences. I think you are ight that an assessment is first needed by Social services. Did you need to prove your illness to them? if so was it your GP that provided the supporting evidence? What to do if GP is unsupportive?

So glad to hear you improved from being so ill.
Justy.

 

[brenda]

They would have had to get a report from my GP. I have had some tricky GPs but l believe there is an art to getting them in line. I always act respectfully and never waste their time or break appointments. It is important to convince them that one is not a hypochondriac . If a GP cannot be trained then one should tell them you cannot work with them and find another.

 

[allyb]

Have you tried the 25% group Justy?..........though they have limited resources they have an (overstretched) advocacy service for people with severe ME.

http://www.25megroup.org/home.html
25% ME GROUP
21 CHURCH STREET
TROON
AYRSHIRE
KA10 6HT

Telephone:
Main Office: 01292 318611 - Office Hours 9.30 to 5pm - Monday to Friday


Advocacy Worker: 0141 570 2938 Office Hours: Wednesday and Thursday 11am - 3pm

They are really helpful and I'm sure that they would be able to give you information.

Are you on Facebook Justy because.......
They also have a face book page and the people that use it are mostly bedbound / housebound and as such are a mind of information as most are in similar positions of varying degrees. I think there is also a Facebook page set up very recently by the 25% group members to help and support those who are too severely affected to use the internet.....with letters, gifts, buddies and advocacy.....in memory of a severely effected sufferer called Bella who sadly died last week.

Kindly regards
allyb

 

[justy]

Thanks @allyb I am currently in the process of reading through their documents etc, which are helpful. I guess what I am really looking for is an advocacy worker for someone who is too severely ill to sort out their own stuff. They have caring, housing and medical needs unfulfilled.
Unfortunately it seems to be a case of a carer having to sort all this out for them. Mnay with M severe M.E have no carer to do this.

I will do what I can, but obviously am ill myself.
I think I will try and call the advocacy worker myself and see what advice they give.It's a bit like the blind leading the blind though, isn't it?

take care all,
Justy .

 

[brenda]

There is an organisation called Stonham who support vulnerable people over housing etc. Sorry can't give a link from my android.

 

[minkeygirl]

@justy Check out this Facebook page. https://www.facebook.com/m.e.myselfandwhy.contact

I know her and she's great. She has a really positive attitude about things. She is limited to computer time but if you PM her and I'm she would love to talk to you.

There is another guy Greg Crowhurt who cares for his wife. Here is his link

http://www.stonebird.co.uk

Good luck

 

[cairidh]

is there anyone willing/able to help someone with severe m.e. who has no friends or nice family left (only abusive family). social services think its psychiatric/ not leaving the house because reclusive because no visitors. how common is it for very severe m.e. to end up with no friends or family left?

 

[justy]

is there anyone willing/able to help someone with severe m.e. who has no friends or nice family left (only abusive family). social services think its psychiatric/ not leaving the house because reclusive because no visitors. how common is it for very severe m.e. to end up with no friends or family left?

Hi Cairidh, i'm so sorry to hear you are in this position. I don't think its uncommon at all for this to happen. My original query above was for someone who is in a similar position to you. Do you have facebook? the 25% group is very supportive and may have more ideas. Also the charity listed above - 25% ME group has an advocacy worker, although I don't think they are always able to help - they couldn't help my friend, but others have found them useful.

When you say social services think its psychiatric, where do they get this from? your GP? Social services have to, by law, do an assessment of anyone who asks for one. It is not within their remit to give you, or take away a diagnosis.

Do you have a diagnosis of CFS or M.E n your medical records? have you had an assessment by SS? what did they decide? do you get any care?

 

[cairidh]

Thankyou for replying the advocacy worker at the 25% group said shes too busy with other people to take me on. A consultant immunologist me specialist diagnosed me with M.E. a long time ago, hes now retired, probably dead by now.
They didn't say I didn't have M.E. just that I was not leaving the house and having no visitors for psychiatric reasons/being reclusive. Bedridden in a darkened room - doh! Most social workers I've met or heard of have been arrogant know-it-alls who think they're experts on every subject under the sun, and think they know better than consultants. They had a psychiatrist assess me who said I wasn't mentally ill, but the social workers obviously disagreed with him. and wished they had the power to overrule him. They would like to bring in another psychiatrist who will give them the diagnosis they want.

 

[cairidh]

Its complicated because I have a mother who is mentally ill, who doesn't look after me, except filling in forms/applying for benefits and shopping and well.... I don't think I can say the rest. If I hadn't ended up bedridden I would have cut off contact with her altogether but I don't have a choice, theres no-one else left. What happened to other other person you knew??

 

[justy]

Its complicated because I have a mother who is mentally ill, who doesn't look after me, except filling in forms/applying for benefits and shopping and well.... I don't think I can say the rest. If I hadn't ended up bedridden I would have cut off contact with her altogether but I don't have a choice, theres no-one else left. What happened to other other person you knew??

Hi @cairidh - sorry to hear about your awful situation. I cant go into the details of my friend here im afraid.
So have social services given you a needs assessment and provided you with help/care/PA? They have to do this by law if you request one. You could request as part of the assessment that you need a PA, then you have someone YOU employ who can advocate for you. It doesn't really matter what you diagnosis is, just do you need care, and as I said it is not within there legal remit to give you a new diagnosis.

If you want to let me know the general area you live in (pm me if you prefer) I can see if I have any contacts in that area. @Countrygirl - do you know of anyone who can help?

 

[Countrygirl]

Hi @cairidh - sorry to hear about your awful situation. I cant go into the details of my friend here im afraid.
So have social services given you a needs assessment and provided you with help/care/PA? They have to do this by law if you request one. You could request as part of the assessment that you need a PA, then you have someone YOU employ who can advocate for you. It doesn't really matter what you diagnosis is, just do you need care, and as I said it is not within there legal remit to give you a new diagnosis.

If you want to let me know the general area you live in (pm me if you prefer) I can see if I have any contacts in that area. @Countrygirl - do you know of anyone who can help?

Hi @justy . I have only just found this thread, so haven't had time to give this thought yet.

@cairidh I am so sorry to hear of your difficult situation, one that is all too common sadly.

I have repeatedly been in the same situation myself so do understand the problem and it does depend on the area in which you live.

In my case, for example, many, many years ago I had a very good medical social worker and doctor.who arranged two hours of daily help for me, and that worked very well for a couple of years. However, after moving, it has been a very different story. I asked for a social worker about three years ago and he informed me that if I had ME I was obviously a heavy drinker as that was the cause of ME. When I denied it he said well you must be a heavy drinker now to still be ill. He found himself leaving my house at a faster speed than he entered. So, I think contacting social services is not always a good idea as they are likely to have little understanding of the disease. We only have to be aware how badly families of children have been and are being treated to know how mis- informed social services are in general. I have opted for locking the door as I become very ill and hoping for the best as I have no one to advocate for me now, especially as the local doctors and the hospital are hostile to the diagnosis and don't want to play any supporting role.

So it does depend on the local situation and whether you have a doctor who can write on your behalf, although many/most of us do not have that advantage. If your doctor will assure social services your illness is physical then they would accept that.

When patients have contacted me I have been able to send a knowledgeable doctor I know to them who writes a letter to instruct the relevant authority on the nature of ME and what is required.

If there is no NHS doctor, is it possible to make an appointment with a private one who understands the illness and who will write a letter of explanation?

How about obtaining an information pack from the MEA to give to them? You could also download a copy of the ICC to send to them with the relevant problems highlighted.

At times, social services and others, including doctors, have phoned me for information and clarification when patients have been in this position. (My number is on the MEA site) I am happy to speak with them and reassure them that the symptoms and problems experienced are a recognised feature of the illness and are not psychiatric and refer them to various supporting documents. (If you want to discuss this possibility I am happy to speak with you on the phone.)

I haven't read Greg Crowhurst's book, but that might be a suitable document for them to use as a guideline.

It would be helpful to know in which part of the country you live.

 

[Invisible Woman]

as I said it is not within there legal remit to give you a new diagnosis.

I have no doubt this is true. However there have been scandals in the past where social workers have used medical experts to provide a 2nd opinion & effectively rediagnose patients.

It happened several years back where young women in difficult circumstances became single mothers and ended up in a mothers & babies residence. The young women were sent to a psych (paid for by soc. services) & he would routinely write reports that gave the social workers the outcome they wanted. They had targets you see - so vulnerable young women given false diagnoses & babies taken away.

Then there is the behaviour of the social worker in Sophia Mizra's case. She even tried to influence a GP to have Sophia's mother sectioned!

I know these are extreme examples but there is the potential to further complicate your life in all sorts of ways.

 

[Countrygirl]

I have no doubt this is true. However there have been scandals in the past where social workers have used medical experts to provide a 2nd opinion & effectively rediagnose patients.

It happened several years back where young women in difficult circumstances became single mothers and ended up in a mothers & babies residence. The young women were sent to a psych (paid for by soc. services) & he would routinely write reports that gave the social workers the outcome they wanted. They had targets you see - so vulnerable young women given false diagnoses & babies taken away.

Then there is the behaviour of the social worker in Sophia Mizra's case. She even tried to influence a GP to have Sophia's mother sectioned!

I know these are extreme examples but there is the potential to further complicate your life in all sorts of ways.

I endorse IW's comments. I know cases where this has happened when SS or other authority have been determined to section a person with ME. They have orchestrated the situation so that the patient's consultant is side lined and eventually prevented from having contact with their patient. It is a risk to bear in mind, unfortunately.

 

[Invisible Woman]

Just occurred to me @justy that Catherine Hale did some research along these lines a couple of years ago.

I believe AfME were involved/connected but still worth a look. Running short on spoons to find and add the link at the moment though.

 

[Esperanza]

Some of us are lucky enough to be/have been under the care of Specialist OT Sue Pemberton @ The Yorkshire Fatigue Clinic http://www.yorkshirefatigueclinic.co.uk/. She has had many homebound, bedbound severely affected patients & has been able to advocate for patients vis a vis GPs, SS, DWP, schools etc.
The other person who can intervene to support patients is Dr Paul Worthley (ex Burrswood) of the ME Trust http://www.metrust.org.uk/
I have never found Action for ME to be any use whatsoever to severely affected ME patients, referring them to the infamous ward 40, otherwise known as The Yorkshire Centre for Psychological Medicine which is under the aegis of the Leeds Mental Health Trust despite being physically located within the Leeds General Infirmary.....
See comments here

 

[Invisible Woman]

I have never found Action for ME to be any use whatsoever to severely affected ME patients, referring them to the infamous ward 40, otherwise known as The Yorkshire Centre for Psychological Medicine which is under the aegis of the Leeds Mental Health Trust despite being physically located within the Leeds General Infirmary.....

Wow. Just when I thought my opinion of the charity couldn't actually get much worse....

 

[Invisible Woman]

In fact because this group is so very isolated and vulnerable, these are the cases that we hear little or nothing about but they are the ones we really need to know about. Not just to try to help these poor souls but, one day, that could be any one of us.