Published in InterAction 79 (Spring 2012)
Cathy Stillman-Lowe hears how helpful people with M.E. find social care services.
The future of social care in England is currently being debated. Last September, the Government launched a consultation, Caring for our future: shared ambitions for care and support, and a White Paper will be published this spring alongside a progress report on funding reform.
But what is the situation for people with M.E. who need help now? Your local authority has a responsibility to assess the needs of any person aged 18 or over if they appear to be vulnerable, including people with physical disabilities. Anyone providing regular or substantial care for a vulnerable adult may also request an assessment.
Councils follow certain criteria for assessing whether a person’s needs make them eligible for support. You can find out more in a leaflet, Fair access to care services: your questions answered, published by the Social Care Institute for Excellence.
There are four bands (low, moderate, substantial and critical) but it is for each local authority to decide which level they can afford to fund; some local authorities are now meeting critical needs only.
You may be given a ‘personal budget’ after your needs have been assessed. This is money allocated to a person with eligible needs so they can make decisions and choices about the care and support they want. You can take all or part of your personal budget as a direct payment. In Scotland, personal budgets are referred to as individual budgets.
What you told us
Edwina, who is moderately to severely affected by M.E., spoke highly of the help an occupational therapist was able to give her.
“He came to the house to see me and was great,” she says. “After talking to me, he suggested all the things they could help with and followed up on that. I couldn’t live independently without them. The biggest help was having a stair lift put in, which I had to make a small contribution to. Then there are things like toilet and bed frames, perching stools and they even sent someone to raise my armchair in the living room.”
Severely affected
Evette, who is severely affected, lives in Buckinghamshire. Her experience has unfortunately been very unsatisfactory.
“I self-referred for a social care assessment as I knew I was entitled to help,” she explains. “The referral process was very difficult; it involved a long screening questionnaire done over the phone by a call centre worker, not someone who knew anything about social care. At one point the worker even insisted that as a 25 year old I should be getting Attendance Allowance [only available to over 65s]. It was not possible to do the screening in parts, or using a different method of communication.
“After the referral went through I had to wait about two months to be contacted by a social worker. There was no communication during this process so I had to chase it. The social worker contacted me by phone, although I had explicitly said during the screening that using a phone is very difficult, and that I would prefer communication in writing or by email. She came out the next day.
“The assessment was very long and hard work. The social worker had no idea about M.E. and kept disbelieving me. She could not believe that I have absolutely no support or that I have no contact with friends or family (just because it’s unusual doesn’t mean it’s not true). She was very patronising and spoke very loudly which obviously didn’t help with the M.E. I was told that no one ever died from not having a wash and I wasn’t eligible, despite being in obvious need.
“It took about three months for the written assessment to come to me. There were two copies and I was supposed to sign one and return it. The report was not a true account of what I had told the social worker. There was nothing in the letter that came with it indicating what to do if you are not happy. So, four months on, I have not signed the report and I have not had any communication from the social work team.”
Louise from Nottinghamshire experienced difficulties with initially accessing services when she was severely affected (she now describes herself as mildly ill), but now receives direct payments.
“I have had a social worker for the past two years and after they helped me move to a ground floor flat, I asked if I could get any help round the house. I was informed by my social worker at the time that as I was on a low income I was not entitled to any help. For the next few months I struggled on with a lot of difficulty to clean and cook for myself or on most days to just get out of bed.
“A few months later I was on the internet and saw the website for adult social care and the details for direct payments. I then complained to my local council about the social worker misinforming me and telling me I could not get any help. This took another few months to sort out but eventually I had an assessment with a social worker and an occupational therapy worker to assess my needs.
“They agreed to give me 19 hours help a week. I sorted out my insurance and started advertising for help. After interviewing applicants I employed two carers and a cleaner to help me each week. In November my direct payments started and since then I have had no problems at all. If I had been told about direct payments from the start I could have employed carers months before I made the complaint and this would have helped me instead of me overdoing it and ending up in hospital in serious pain.”
Direct payments
Your local council is obliged to offer you the option of direct payments in place of services you currently receive or are assessed as needing. They are not a replacement of income so direct payments will not affect your eligibility for other benefits. To find out more, contact your local council or read A guide to getting direct payments from your council.
One of the most important new initiatives in social care in the UK is ‘personalisation’ or self-directed support. This is the process by which those eligible for social care are allocated a personal budget to spend on the support they need in the way they want. This means service users, not professionals, have control.
Mixed experience
An InterAction reader who lives in Scotland had a mixed experience when it came to accessing social care. “I have applied for social services. They are having difficulty deciding whether I fall under the physical illness social work department or the mental health social work department.
“Had it not been for the fact that I personally used to work beside one of the managers, I am uncertain as to whether I would be receiving much support. I currently have the help of one mental health support worker for one to two hours a week for shopping and attending appointments etc. I see another social work assistant (from the physical illness social work department) for about one hour per month. She has assessed my needs but I cannot afford any of the services that are on offer (including the alert system – I get black-outs). An occupational therapist assessed the need for a wet-room type shower and this has been installed and is a great help. But I cannot afford help with housework, meals, self-care etc.
“My mental health support worker is brilliant. I don’t know what I would do without her. Just having her company, and being able to get out and about, makes such a difference.
“However, I must cram all activities into the one to two hours I see her. This causes a minor relapse and I am unable to do much in the following few days. I am just beginning to recover when our next appointment is due. I cannot get out of this boom-bust scenario and so am unable to pace or consider recovery. But without this help, I would be virtually housebound.“
Following a Disability Living Allowance appeal, this lady was awarded low rate care and low rate mobility, an extra £39 per week, and is now trying to organise putting an alert system in place. The current uncertainty about the cause or causes of M.E. proved particularly problematic for her as “the confusion leaves support services not knowing where I fit, what I am entitled to and who should supply the need.”
Useful contacts
To order copies of A guide to getting direct payments, contact the Department of Health at PO Box 777, London SE1 6XH or send an email.
To order copies of Fair access to care services: your questions answered, contact the Social Care Institute for Excellence at 2-4 Cockspur Street, London SW1Y 5BH. Tel: 020 7089 6840
See more information on social care in Scotland, Wales and Northern Ireland (search for ‘health and social care assessments’).
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