Carers

Carer’s Information

FROM ISSUE 20 OF THE QUARTERly NEWSLETTER

Severe ME/CFS: Identifying The Underlying Symptoms

Greg & Linda Crowhurst, Nov 1 2005

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.

Severe ME/CFS: Identifying The Underlying Symptoms - TABLE

Carer’s News

· For up to the minute Carer’s News visit the Severe ME Carers website:

www.onetree93.freeserve.co.uk

· Confusion over 'jobs for carers'

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.

· Read the new Carers BILL

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

· Carers Pack 2005:

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

Topics for Future Articles

* Carer's Needs - are they being met ?

* Carer's Assessment - how did you find it ?

* Carer's Achievements - political, educational, creative - inspire others !

We'd love to hear from you.

Carer Training & Development

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.

Help For Carers

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.

Carers National Association:

0808 808 777 Mon-Fri 10am to 4pm

Address: Carers National Association,

20-25 Glasshouse Yard, London EC1A 4JS

Carer’s Story

By Greg Crowhurst

MRC : ME Research Controversy

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!

CARERS INFORMATION FROM ISSUE 18

The Carers (Equal Opportunities) Act Receives Royal Assent

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.”

The Act began as Private Members Bill introduced by Dr Hywel Francis MP.

Main clauses contained within the Carers (Equal Opportunities) Act 2004.

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.

(would members please note this Act is applicable in England and Wales only)

Work Focused Benefit Interviews

(Source Carers UK)

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.