Carers

The overwhelming majority also agree that carers’ benefits are far too low, with over three-quarters (76%) stating that the current level of Carers’ Allowance is unreasonable. But when asked to estimate the number of carers in the UK, 8 out of 10 were unable to pick the correct figure of 6 million, with almost three-quarters (71%) underestimating by over 4.5 million.

Meanwhile a Carers Week survey highlighted the shocking number of carers who have been pushed to extreme levels of stress and depression as a result of caring. The results also revealed that carers feel they go unrecognised or ignored by different groups in society, and this has a significant negative impact on their lives.

Large numbers of carers say they have been pushed to extreme levels of stress and depression as a result of caring. Almost three-quarters (74%) of carers say that they feel that they have reached breaking point.

Over a third (41%) of carers stated that ‘frustration with bureaucracy’ pushed them to breaking point, often the complex and lengthy procedures for welfare benefits, healthcare and social services. Other factors include a deterioration in the health of the person being cared for, lack of sleep and financial worries.

For most carers, ‘practical support’ would – or did – make the difference when they were at breaking point, with ‘just having someone to talk to’ a close second. Nearly a third (31%) say that more money would make a difference – hardly surprising given that Carers Allowance is the lowest benefit of its kind at just £53.10 per week.

A massive 8 out of 10 carers feel that their role is overlooked or ignored by professionals, who include GPs, social workers and hospital staff. Three-quarters of all carers also feel that their role is unrecognised by family members and friends. Almost two-thirds (63%) of carers say that their lives are made ‘much more difficult’ as a result of being overlooked or ignored.

More than half (54%) say that being overlooked has affected their health and a slightly higher number (55%) say that it has left them worse off financially. The ten charities who organise Carers Week are calling on the Government to do more to support carers, along with other organisations such as the NHS, improve carers' lives.

Fieldwork for the YouGov survey was undertaken between 5–7 May 2009. The survey was carried out online. Total sample size was 2,109 adults. The figures have been weighted and are representative of all GB adults (aged 18+).
1,941 carers took part in the Carers Week survey, both online and by post, which was carried out between 22 January–25 March 2009.

Respite Care

When you are taking care of somebody you also need to think about caring for yourself. Depending on the type and intensity of care needed, your own health and well-being can be compromised by looking after someone else. In most jobs you get paid holidays - you should try to take some time off from caring too!

You can get some respite from your caring role in a number of different ways:
1. Residential respite: The Person you care for goes away to be looked after by someone else for a while – residential or nursing care or on holiday.
2. Domiciliary care: Someone comes into your home and takes over care for a while (a few hours or sometimes overnight) so you can go out or have some time to yourself.
3. You can sometimes get a break when the person you care for is involved in other activities – for instance at school, at a Day Centre.

The first step is usually to approach the local authority to ask for an assessment for the person you care for – and for you as his/her carer. The Local Authority social worker doing the assessments will consider the needs of the person you care for, and your needs as their carer, and consider what services they may be able to provide (bearing in mind local priorities and availability of services). They will also do a Financial assessment under their Charging Policy which means that you (or – more usually – the person you care for) may be charged for the services according to means.

For example: David cares for his son Michael. The Local Authority assessment identifies the need for Michael to spend some time with people his own age – and also for David to have some regular time off and a good night's sleep. The Assessor recommends that Michael should attend a Day Centre for 3 days a week and go to a residential unit 4 times a year.

Recent legislation (‘Carers Equal Opportunities Act 2004’) gives carers increased rights when their needs are being assessed. A carer's wish to work, undertake training or leisure activities should be taken into account as part of a carers' assessment. Make sure that the person doing the assessment understands what sort of help you need to enable you to have some life of your own.

Vouchers

Instead of organising services directly, Local authorities are now able to give people vouchers which they can redeem with local services they choose.

For example: Jean looks after her husband Geoff (who has dementia) 24 hours a day. They are allocated eight hours a week of respite care. Instead of arranging this with Care Watch (a local agency), the Local Authority gives Jean vouchers for 32 hours a month of care which she can redeem flexibly with whatever agency she likes at whatever time is best for her.

Direct Payments

In this case, the Local Authority works out what services they think you may need and then, instead of arranging the services, gives you (or the person you care for) the money to buy the service directly from an appropriate agency or person. You could then use the money to employ somebody directly yourself if you wish. See the Department of Health Website for more details.

For example: Sue looks after her mother Daisy and also has a part time job. She can leave Daisy for a few hours on her own, but needs to arrange for someone to come in at lunch time. Sue also needs to have a complete break. After assessment Sue gets direct payments to enable them to buy in appropriate help. Sue is able to employ Jenny her neighbour for an hour a day to prepare lunch for Daisy. Jenny also agrees to move in to look after Daisy for two weeks. Sue uses the direct payments to pay Jenny. This works well for everyone, and particularly for Daisy who knows and trusts Jenny.

Some voluntary organisations also provide respite services. Crossroads Care is a charity which has a network of local schemes providing respite in the home, using trained staff. Many Crossroads schemes do not charge although there is often a waiting list for their services.

A small number of the Carers’ Centres that work in partnership with The Princess Royal Trust for Carers directly provide respite care - whether or not they provide this service they can give you information and support about what is available locally.

Holidays

There are a number of organisations that provide opportunities for children with special needs or people with disabilities to go on holiday with appropriate support provided.

Some, such as Vitalise, provide special weeks for carers to go with the person they care for. A change of scene can be very therapeutic if there is appropriate support available to help you to enjoy it.

When Linda first got ill there were such a bizarre number of symptoms that it was difficult to clearly identify them. Colour, for example, seemed to hurt her eyes. Linda eventually found it extremely helpful when her colour sensitivity was confirmed as a real physical symptom. Sometimes all she can say is: “people’s energy hurts me” or “noise hurts my body”. We have made this chart to try and identify the likely physical causes that underlie statements like this, statements that might seem odd to an outsider or even to yourself .

We hope this chart might help to validate the person’s experience and also help the carer appreciate that there really is an identifiable, underlying issue. The chart could also come in useful on those occasions when one is trying to articulate more clearly the severe sufferer’s physical reality in medical terms, for example in applying for benefits or dealing with professionals.

A lot of people with severe ME will have had an experience of being told ME/CFS is all in their mind, particularly if they have been ill for quite a few years. This chart is part of our attempt to firmly show that it is not.

From Issue 27

carers27 Carers’ Information An ME/CFS Carers Guide

by Carer, Trevor WainwrightA practical guide to caring for people with M.E. based on my experience. This is a strategy arrived at through trial, error, frustration and patience. What I have learnt has been by listening to the experience of others in the same situation, who have looked after sufferers among their own families and friends.The cardinal rule is, believe in their illnessTry to remember how you yourself felt when you had an illness and remember that they feel 100 times worse, and that there seems to be no end to that feeling and pain. Lots of patience and understanding are required. Try the best psychological treatment; simply say "okay I believe you, now how can I help you?"Love and support at all timesRemember they know how they feel at any given moment, help them get through the illness as best you can. It ’s very difficult for the carer to cope but even worse for the person suffering from ME. It doesn’t just affect them, it affects the whole family, you have to change your life to fit in with the illness. You may want to give them a cuddle, they may not want it. However upsetting for you, you must accept that sometimes they want to be left alone. Let them come to you, always be ready. Remember, ME is a serious physical illness, and a sufferer ’s physical and mental states can change very quickly but they are still the same person underneath. Encourage, but do not force them to talk about the illness and how they feel, but take care not to over burden them with your interest. At all times try to keep your sense of humour, it can keep you going through many bad and frustrating times.
Learn all you can about the illnessG.P.s are busy people. Many do not have the expertise or the time to deal with M.E. Ask to be referred to a regional clinic (e.g. Leeds or Sheffield). Sadly most of the NHS support is based on management and coping strategies. If there are different doctors in the practice find one that is understanding of the illness. If not, move to another practice. Remember they are there to serve you. Certain private doctors may provide a better service. Visit your local library, they have many books on the illness. If not, ask and they will order them for you. They will also have internet access, a source of much useful information, but beware, there is no guarantee of the accuracy of this, join internet discussion lists and chat groups. Listen to others’ experiences and suggestions, but do not force their experiences on the sufferer. The illness is as individual as they are. Support Groups, either local or national, can be useful for information. Contact them, make the first step, if you think they can help, use them, if not try another. Remember many groups are run by sufferers themselves.Treatment issuesListen to the sufferer, as they in turn must listen to their own body. Treatment is a lottery, and what works for some, may not for others, so the only realistic option is try it and see. Do not be put off trying alternative therapy. Give it a try - if it makes you worse or there is no improvement you can always stop it. Some mental health strategies have not been found as helpful as some practitioners would hope. Family support and belief is often better, far better. Remember that as a carer you may be the sufferer’s only friend. Be prepared for social isolation.EducationBy law, children have to be educated, but do not have to attend school. LEAs must provide suitable education to match the needs of the pupil which may be home tuition. The doctor or paediatrician can help to secure this but you may need to be persistent. Further InformationWhat is described in this article is not exhaustive. You are not alone, there are many others. At all times remember though, it is the sufferer ’s wishes that are paramount . Do not force, but encourage, do not drive, but lead, do not demand, but ask. You can give much to a sufferer, and always remember, the best you can give is Support and Love.Website Aims to Identify and Support CarersA website has been launched to help professionals who work with unpaid family carers. The website, developed by the Princess Royal Trust for Carers (PRTC), offers specialist information for those who work with carers in the health, education and social care sectors.It can help professionals identify and support unpaid adult and young carers. Many young carers do not recognise themselves as such, but often suffer because they are frequently absent from school, don’t have time to do their homework and can be bullied.PRTC currently helps almost 50,000 carers in Scotland – including 3,500 young carers – cope by giving them information, support and advice through its network of 29 carers’ centres, 49 young carers’ services and interactive websites.Young carers are those under 18 who help family members and friends carrying out tasks usually done by adults – such as looking after the rest of the family, helping their loved one and ensuring they take medication. This can affect their school life and their friendships.

To view the new website visit:
www.carers.org/professionals

From Mid April the DWP has been sending out letters requesting carers to attend interviews at job centres. The work carers do saves the UK billions of pounds. Carers are very angry indeed about the DWP's move.

· I am delighted to announce that carerstogether is now a registered NICE Stakeholder for the Chronic Fatigue Syndrome - ME Guidelines. We have a voice!

The revised and fully updated Carers Pack will be available from July 1st online and from the 25% Group.

LEARN4LIVING is currently being piloted by City & Guilds. The course, which can be accessed through the internet, is designed to meet carer’s needs for training in personal development and confidence building and can lead to the equivalent of a GCSE. More information in the next issue.

Thanks to two pieces of legislation – the Carers (Regulation and Services) Act 1995 and the Carers and Disabled Children Act 2000 – people caring for disabled relatives, neighbours or friends can now expect certain services from their local council. (The latter Act is not applicable in Scotland).

As a carer in England and Wales, you can now ask for an assessment of your needs as well as those of the person being cared for. You may be able to get help with respite care or other support. Respite care is helping look after the person you care for while you have a break.

For details on how to get it, contact your social services department. To contact your social services department look under the name of your County Council, Borough Council or in some areas, now Unitary Authority, or London Borough. You may be able to find out about other local organisations that can help from the phone book, your local library, the social services department or a doctor’s surgery.

I have got about an hour. It’s an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts. Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That’s a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5’s as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment. Professor This and That meanwhile have spent the time building a nice little career thank you very much, cheekily suggesting that if only people like Linda could change their beliefs that they are ill, then.....I am searching for an analogy here, you know when you can’t get rid of a particularly annoying pest; something loathsome that crawls out of woodwork ... I don’t know, but I hope you get the picture, for that is how this carer - and I suspect I’m not the only one, views the Cognitive Behaviour boys. It wouldn’t be so bad if they’d just gracefully admit “it’s a fair cop guv!” Okay you’ve done alright on the back of the likes of Linda with your mad ideas and theories, now just go away and leave us alone !Will they heck!! Those blighters have only gone and grabbed for themselves £11 million quid. Eleven million pounds of our money!! £2.5 million for the Mighty Rich Con (Medical Research Council) scam and the rest for a hoary horde of psychiatrists to staff those ME treatment centres. If you and I had eleven million pounds, I wonder what we’d spend it on :

· It wouldn’t be our first thought to spend it on someone to come out and put our loved one through their paces with 90 minutes of Graded Exercise “Therapy”.

· It just wouldn’t occur to us to send for a psychiatrist anymore than we’d expect a shrink to turn up and ask us if we’re sure, if we’ve broken down by the side of the road.

· We would say “you’re having a laugh” if a man in white coat asked us to spend £2.5 million on a Missed Real Chance; that specifically excludes those suffering from ME !

You and I , we wouldn’t waste time faffing around. We have the overwhelming evidence of our own eyes to go on. You see, unlike the MRC mob- we believe in ME !!We’d blinking do something so revolutionary it would be shocking. We’d spend a penny on physical research. And another and another.....we’d make some progress wouldn’t we ?Controversially it might just be worth our while funding a CBT - Cut-out the Bollocks Therapy for those deluded behaviourists to attend, while the rest of the world wakes up. Ah well, More Rubbish and Confusion. Another day wasted.

Note from the Ed. Are you a carer to a severe ME sufferer? Would you like to write a brief story about your experiences as a carer, good or bad? Please put pen to paper and get in touch. We have decided to feature one story per Newsletter from a carer’s perspective!

Health Minister Stephen Ladyman, said: "Support for carers must revolve around ensuring they are able to make choices as individuals.”

"The Carers (Equal Opportunities) Act will provide a firm foundation for better practice by councils and the health service. The Act provides councils with the appropriate levers to promote better joint working and Cupertino. This will mean less duplication of work by social services and more focus on the needs of individual carers.”

"Most importantly, we believe it will deliver real and concrete changes for carers by placing a duty on councils to inform carers of their existing rights and extend those rights to consider the carers’ wish to combine normal everyday activities like work and hobbies with caring.”

Clause 1 (Duty to inform carers of right to an assessment) Introduces new provisions into the Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000. This will ensure that carers are made aware of their right to an assessment.

Clause 2 (Assessment of carers) This expands assessments under the 1995 and 2000 Acts by requiring councils to consider the carers’ wishes to work, undertake any education, training or leisure activities. Carers will have the opportunity to discuss alternative care services and highlight the importance of equality of opportunity for all aspects of life. Councils should then take into account the outcome of such holistic assessments when providing services.

Clause 3 (Co-operation between authorities) Makes provision for consideration of carers in the planning process, as well as providing a specific duty to consider assistance in relation to individual carers. It will promote joint working by requiring bodies, including councils and the NHS, to give due consideration to requests for help from a local authority in relation to planning and the provision of services that might assist individual carers to care and to continue to care.

If your partner claims Income Support, Jobseeker’s Allowance, Incapacity Benefit and Severe Disablement Allowance then you may well be called for an interview under Jobcentre plus, a new service being introduced in certain parts of the UK with the intention of extending it everywhere by 2006. The work-focused interview will be repeated every 3 years though you will not be called if you or your partner is over 60 or under 18.

If you don’t attend, your partner’s benefit will be reduced by £11.13 a week (at 2004/5 benefit rates), unless you have a good reason for not attending. Good reasons can include illness, a domestic emergency or a job interview. Benefit is restored if you attend a work-focused interview later.

If caring responsibilities, or other circumstances, make it difficult to attend the interview, you can ask for it to be deferred to a later date, or ask for it to take place in your own home. If you think there is no prospect of you being able to work in the foreseeable future, you can ask for the interview to be waived indefinitely. If the Jobcentre Plus adviser refuses to waive or defer the interview you must attend or your partner’s benefit will be reduced. You cannot appeal against a refusal to defer or waive the interview, but either you or your partner can appeal against any decision to reduce benefit because you did not have a good reason for failing to attend the interview.
You must go through the interview process, but you don’t have to follow the advice given. You must respond to questions and provide details of your employment and educational experience. However, you do not have to apply for any job they tell you about or take any other action that they recommend.