FIBROMYALGIA SUPPORT GROUP (MEDWAY)



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16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.uk

Website: fibrosupportmedway.btck.co.uk

August 2011 ISSUE 54

Next Meeting: Thursday 22nd September, at St Stephen’s Church Hall, Maidstone Road,

Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2011

Thursday 22nd September – Wanda Wright - Homeopath

Thursday 24th November – A talk about the Vicious Cycle of Fibromyalgia and Emotional Impact. Also a talk about an NHS Exercise Group specifically for those with Fibromyalgia.

MEETING DATES FOR 2012

Thursday 26th January

Thursday 22nd March

Thursday 24th May

Thursday 26th July

Thursday 27th September

Thursday 22nd November

All at the above address and time.

JULY MEETING

Another well attended meeting despite it being school summer holidays.

We were treated to an excellent talk by Zara Cuccu and Amy White, both Dieticians from the Medway Maritime Hospital. Both seemed to have a good understanding of Fibromyalgia and the symptoms associated with the condition. It was interesting to hear about the good and bad things in our diets, and how to obtain a balanced diet. It was also interesting to hear about the amounts of salt, sugar and fats etc that are to be found in certain foods.

There will be a full report of their talk in the next newsletter.

UK FIBROMYALGIA AWARENESS WEEK 2011

The UK Fibromyalgia Awareness week 2011 runs from September 4th until September 11th.

TELEPHONE ENQUIRIES

Please note that telephone calls to the group should be made on weekdays between 10am and 5pm. For those who are at work and unable to make telephone calls during those times, it would be appreciated if calls could be made during weekday evenings before 7.00pm.

SUPPORTERS’ HELPLINE

Ron Robson is available on 01634 865925 to take calls from supporters of those with Fibromyalgia, who just need to talk about their concerns.

FUNDING UPDATE

The balance in our Bank Account at the end of May 2011, was £3460.48.

Expenditure since then has been, £64.17 for Stationery, £181.53 for Photocopying, and £6.99 for Library.

This leaves a total of £3207.79.

At the July meeting and during the past two months, we raised, £26 on the raffle, £10 for pens, £14.33 for refreshments, £224 in donations, £262.36 for sale of 024 Fibromyalgia, £6.50 for plugmates, £28 for DVDs, and £3 for Car Stickers.

This gives a total of £574.19 to be deposited in our bank account.

This gives us total of funds of £3781.98.

DONATIONS

I would like to acknowledge all donations sent in during the last two months. All donations help ensure the service remains at the present level. I am not able to respond to each one personally but please accept our thanks to you all. Thanks also for the lovely letters I receive. They are much appreciated

JULY COFFEE MORNING

We held the fourth coffee/drop-in session on Friday 8th July. These were experimental trial sessions funded by Cllr. Andy Stamp’s Ward Improvement Fund, following several requests for coffee mornings outside of bi-monthly meetings aimed at those who could not normally access the regular meetings due to the time of day, and the specific day the meetings are held.

With these requests in mind, we tried various times of day for the sessions including evenings and mornings. Unfortunately, the attendance at each one was very low – never more than eight (including those who had come with their Fibro families or friends), and the last one, in July, attracted five people only three of whom had Fibromyalgia.

I understand that for those who did attend it was a good experience in that it did mean that they were able to discuss any problems one-to-one, but the cost of hiring a venue and the effort involved appears to outweigh the need.

Sadly, we will not be repeating this exercise as it appears that meetings outside of the regular ones are not required, so we shall just continue with the regular bi-monthly meetings that do attract large numbers.

LIVING WITH CHRONIC PAIN CD

The Living with Chronic Pain CD that we have sold a large number of during the last eight years, is now available to download (free) or listen to (free) online at .uk

024

Due to the change in the exchange rate and the fact that we were not charged duty on the latest order of 024, we can offer these at a reduced price whilst stocks last.

If you are able to pick one up at meetings, the cost will be £8, but with postage it will be £9 each. Please make cheques payable to Fibromyalgia Support Group (Medway)

NORTH KENT GROUP

Contact: Philomena (Phyl): 0844 887 2348

or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Contact: Heather Hammond: 0845 458 3762

or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Maria: 0845 458 3780

Email: sandsfibrosupport@

DISABILITIES AND CARERS SUPPORT

SUE HARRISON

CARE PARTNERSHIP MANAGER

JOBCENTRE PLUS

(Below is an overview of the talk given at the May meeting)

WHO ADMINISTERS WHICH

BENEFIT?

Pension, Disability and Carer Service (PDCS)

• Attendance Allowance (AA)

• Carers Allowance (CA)

• Disability living Allowance (DLA)

Her Majesty’s Revenue and Customs

• Child Benefit (ChB)

• Child Tax Credit (CTC)

• Guardians Allowance (GA)

• Home Responsibilities Protection (HRP)

• Working Tax Credit (WTC)

• Pension Credit (PC)

• State Pension (SP)

Local Authorities (LA)

• Council tax Benefit (CTB)

• Housing Benefit (HB)

• Disabled Facilities Grant (DFG)

Jobcentre Plus (JCP)

• Jobseeker’s Allowance (JSA)

• Income Support (IS)

• Employment Support Allowance (ESA)

• Incapacity Benefit (IB)

• Social Fund (SF)

• Industrial Injuries Disablement Benefit (IIDB)

• Constant Attendance Allowance (CAA)

INCOME SUPPORT (IS)

• Income Support is extra money to help people on a low income. It’s for people who don't have to sign on as unemployed.

• Whether you qualify or not and how much you get depends on your circumstances.

– Sick or disabled

– A lone parent

– A carer

– Registered blind

• IS can be paid in addition to other benefits

• Only one person in a family can claim IS at any one time

• IS is no longer paid for children for people making a new claim

• Undertaking voluntary work does not automatically mean that IS will cease

JOBSEEKER’S ALLOWANCE (JSA)

There are two types of Jobseeker's Allowance:

Contribution-based Jobseeker's Allowance

Jobcentre Plus can pay this for up to 182 days. It’s based on how much National Insurance a customer has paid. Generally, self-employed contributions will not help a customer qualify for contribution-based Jobseeker’s Allowance.

Income-based Jobseeker's Allowance

This is based on a customers income and savings. They may get this if they have not paid enough National Insurance contributions (NICs) (or they have only paid contributions for self-employment) and they are on a low income.

Contribution-based Jobseeker's

Allowance

• The maximum weekly rates are:

• Aged 16 – 24 - £51.85 

• Aged 25 or over - £65.45

Income-based Jobseeker's

Allowance

• The maximum weekly rates are:

• Single people, aged under 25 - £51.85

• Single people, aged 25 or over- £65.45

• Couples and civil partnerships (both aged 18 or over) - £102.75

• Lone parent (aged under 18) - £51.85

• Lone parent (aged 18 or over) -£65.45

• For income-based Jobseeker's Allowance, the amount may be less after your household income, pension and savings is taken into account.

Please note figures are from the Direct Gov website as at 4th April 2011

EMPLOYMENT AND SUPPORT

ALLOWANCE (ESA)

This is delivered through the existing Jobcentre Plus network.

There are two types – Contribution based & Income related.

The person has:

An illness or disability that affects their ability to work and:

– Off work or out of work

– Self-employed

– Work for an employer but cannot get Statutory Sick Pay (SSP)

– Have been getting SSP but it has now stopped

There are two groups in Employment and Support Allowance, with different allowances and conditionality:

• Work Related Activity Group

• Support Group

Work-Related Activity Group

Those for whom we assess an eventual return to work is realistic will be placed in the Employment and Support Allowance Work-Related Activity group. If a customer is placed in the Work Related Activity Group, they will be expected to take part in work focused interviews with their personal adviser. In return, they will receive a Work Related Activity component in addition to their basic rate of benefit. If a customer refuses to go to the Work Focused Interviews, or to take part fully in the Work Focused Interviews, it may affect their entitlement to Employment and Support Allowance.

Support Group

The customer will receive a support component in addition to their basic rate of benefit. If a customer is placed in the Support Group they do not have to go to interviews, but they can ask to talk to a personal adviser if they want to. The customer will receive a support component in addition to their basic rate of benefit.

If a customer is placed in the Work Related Activity Group they will get support to help them prepare for suitable work.

If a customer is placed in the Support Group because their illness or disability has a severe effect on their ability to work, they will not be expected to take part in any work related activity to receive their benefit. They can do so on a voluntary basis if they want to.

CARER’S ALLOWANCE

Carer's Allowance is a benefit to help people who look after someone who is disabled. You don't have to be related to, or live with, the person you care for.

The person being cared for must be in receipt of either

• Attendance Allowance (AA)

• Disability Living Allowance (DLA) – middle or higher care component

• Constant Attendance Allowance (CAA)

Claiming Carer's Allowance can affect the level of some other benefits and entitlements that you, or the person you care for, receive. You need to report any changes in circumstances for yourself, the person you are caring for or a dependent adult. A change can affect whether you can receive Carer's Allowance or the amount you get.

The Carer must be …….

• Aged 16 or over

• Provide care for the person for at least 35 hours per week

• Not on a full-time course of further education

• Present in Great Britain

• Not earn more than £100.00 per week

You can't get Carer's Allowance if:

• You're in full-time education with 21 hours or more a week of supervised study

• You earn more than £100 a week after certain deductions (like Income Tax) have been made

How much do you get?

• The weekly rate is £53.90. This is reduced by the amount of certain other benefits, including State Pension, that you get.

• If you receive certain other benefits at £53.90 or more a week, you won't get Carer's Allowance as well.

• You may be able to get an additional amount for your husband, wife, civil partner or someone living with you who looks after your dependent children.

ATTENDANCE ALLOWANCE

Attendance Allowance (AA) is a tax-free benefit you may get if you're aged 65 or over and need help with personal care because you're physically or mentally disabled.

If you're under age 65, you may get Disability Living Allowance.

Help with personal care means things like :-

• Moving around the house, including getting to and using the toilet

• Eating or drinking

• Washing

• Dressing

• Getting in or out of bed

• Communicating needs

DISABILITY LIVING ALLOWANCE

Disability Living Allowance is a tax-free benefit for disabled children and adults to help with extra costs you may have because you are disabled. It is not based on your disability but the needs arising from it. For example, if you need someone to help look after you.

Disabled people aged 65 years and over should claim Attendance Allowance

DLA Care Component

• To get the care component of Disability Living Allowance (DLA), your disability must be severe enough for you to either:

• Need help with things such as washing, dressing, eating, getting to and using the toilet, or communicating your needs

• Need supervision to avoid you putting yourself or others in substantial danger

• Need someone with you when you are on dialysis

• Be unable to prepare a cooked main meal for yourself (if you have the ingredients), if you are aged 16 or over

• There are three rates of care component depending on how your disability affects you:

Three rates of care component :

Lowest rate

• If you need help for some of the day or you are unable to prepare a cooked main meal.

Middle rate

• If you need help with personal care frequently or supervision continually throughout the day only, or help with personal care or someone to watch over you during the night only, or someone with you while you are on dialysis.

Highest rate

• If you meet both a day and a night condition for the middle rate, or if you are terminally ill and claiming under special rules (see below).

• You can get DLA for your care needs even if no one is actually giving you the care you need, even if you live alone.

If you have mobility needs

• To get the mobility component of Disability Living Allowance, your disability must be severe enough for you to have any of the following walking difficulties, even when wearing or using an aid or equipment you normally use:

• because of a physical disability, you are unable or virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk

• you have no feet or legs

• you are assessed to be both 100 per cent disabled because of loss of eyesight and not less than 80 per cent disabled because of deafness and you need someone with you when you are out of doors

• you are severely mentally impaired with severe behavioural problems and qualify for the highest rate of care component

• you need guidance or supervision most of the time from another person when walking out of doors in unfamiliar places

• There are two rates of the mobility component depending on how your disability affects you:

Lower rate

• If you need guidance or supervision out of doors.

Higher rate

• If you have any of the other, more severe, walking difficulties.

• You may be entitled to only the care component or only the mobility component, or you may be entitled to both.

BLUE BADGE

The Blue Badge scheme is for people with severe mobility problems. It allows Blue Badge holders to park close to where they need to go. The scheme operates throughout the UK and is managed by local authorities, who deal with applications and issue Blue Badges.

Who can have a Blue Badge

Anyone over two years old automatically qualifies for a Blue Badge if they are either:

• Registered blind

• Receiving the higher rate of the mobility component of Disability Living Allowance or a War Pensioner's Mobility Supplement

People who may need to have an assessment

Anyone over two years old may be eligible for a Blue Badge, if they either:

• have a permanent and substantial disability which means they cannot walk, or makes walking very difficult 

• drive a motor vehicle regularly and have a severe disability in both arms, making it very difficult or impossible to operate parking meters

• If you are a parent of a child who is less than two years old, you may apply for a Blue Badge for your child. You can do this if your child has a specific medical condition which means that they either:

• must always be accompanied by bulky medical equipment which cannot be carried around without great difficulty

• need to be kept near a vehicle at all times to get treatment for a condition when necessary

• If you do not automatically qualify, your eligibility will need to be assessed by your local council. To help them decide if you can get a badge, they will ask you some questions.  Your local council might also ask you to get assessed by an independent health professional, like an occupational therapist or physiotherapist.

You do not need to own a car or be able to drive one. You can use the Blue Badge in any vehicle that you are travelling in as a driver or a passenger.

WORKING TAX CREDITS (WTC)

Working Tax Credit is based on the hours you work and get paid for, or expect to be paid for, either as an employee or a self-employed person. Unpaid work doesn't count as work when claiming tax credits.

CHILD TAX CREDIT (CTC)

If you work and pay for childcare you may be able to get tax credits to help with the costs. You can claim as soon as you start paying childcare costs and only for the amounts that are actually paid by you.

If your child has a disability, or if you're responsible for a child with a disability, you may qualify for extra Child Tax Credit, to help cover the cost of looking after them.

SUPPORT TOOLS/NEXT STEPS

• Benefits Adviser

directgov.uk/benefitsadviser

• Directgov

directgov.uk

• Benefits & help when going back to work

directgov.uk/workingbenefits

• Benefits of Working leaflet – order online

.uk/workingbenefits

• Work focused support for carers

.uk/carersemployment

THYROXINE & SOYA PRODUCTS & CALCIUM

Ingestion of soya products simultaneously with thyroid hormones appears to reduce the absorption of the hormones. To be safe, people taking thyroid medication should not consume soya products within three hours of taking their medication.

Simultaneous ingestion of some calcium formulations with levothyroxine has been reported to reduce the effectiveness of levothyroxine. For example, 1,200 mg per day of calcium as calcium carbonate, taken along with levothyroxine, significantly reduced absorption of the thyroid hormone. Levothyroxine activity will not be blocked if it is taken in the morning and calcium carbonate is taken after lunch and dinner. Separating these medications by at least four hours is recommended.

Information taken from the Holland & Barrett website

THE EFFECTIVENESS OF HYDROTHERAPY IN THE MANAGEMENT OF FIBROMYALGIA SYNDROME: A SYSTEMATIC REVIEW

McVeigh, JG, McGaughey, H, Hall, M and Kane , P (2008) The effectiveness of hydrotherapy in the management of fibromyalgia syndrome: a systematic review. Rheumatology International, 29 . pp. 119-130. Last modified on 24th August 2010

Abstract

Hydrotherapy is often used in the treatment of fibromyalgia syndrome (FMS), however there has been limited evaluation of its effectiveness. The aim of this systematic review was therefore to examine the effectiveness of hydrotherapy in the management of FMS. AMED, BNI, CINAHL, The Cochrane Library, EMBASE, MEDLINE, ProQuest, PubMed, Science Direct and Web of Science were searched (1990 - July 2006). Key words used ‘fibromyalgia’ AND ‘hydrotherapy’, ‘balneotherapy’, ‘aqua therapy’, ‘pool therapy’, ‘water therapy’, ‘swimming’, ‘hydrogalvanic’, ‘spa therapy’, ‘physiotherapy’, ‘physical therapy’ and ‘rehabilitation’. Searches were supplemented with hand searches of selected journals. Randomised controlled trials (RCTs) were assessed for methodological quality using the van Tulder scale. Ten RCTs met the inclusion criteria. Mean methodological quality was 4.5/9 on the van Tulder scale.

Positive outcomes were reported for pain, health-status and tender point count. There is strong evidence for the use of hydrotherapy in the management of FMS.

CAN WE TALK OUR WAY TO BETTER HEALTH?

USE OF COGNITIVE BEHAVIOURAL THERAPY IN TREATING FIBROMYALGIA SYNDROME

Reprinted by kind permission of Fibromyalgia Support Northern Ireland

Many studies suggest that various types of ‘talking therapies’ may help alleviate the symptoms of physical conditions. The most successful of these is CBT.

Just because you may explore this option or be referred to it by your doctor or specialist does not mean that your Fibromyalgia is ‘all in your head’. CBT recognises the root of your diagnosis and does not try and dispute this; - moreover it tries to offer solutions as to how you can better take control of your own illness.

What is Cognitive Behavioural Therapy?

Cognitive behavioural therapy is the term for a number of therapies that are designed to help solve problems in people's lives. CBT was developed from two earlier types of psychotherapy:

1) Cognitive therapy, designed to change people's thoughts, beliefs, attitudes and expectations.

2) Behavioural therapy, designed to change how people acted.

American psychotherapist Aaron Beck helped to develop CBT and believed that the way we think about a situation affects how we act. In turn, our actions can affect how we think and feel. It is therefore necessary to change both the act of thinking (cognition) and behaviour at the same time.

How does CBT work?

CBT teaches people how to make sense of problems by breaking them down into smaller areas to see how they are connected and how they can affect you. This includes looking at thoughts, emotions, physical feelings and actions in reaction to a situation.

Usually the recipient will be asked to keep a diary to identify how they react to certain events. This will help to identify patterns of thoughts, emotions, physical feelings and actions, and see if they are unrealistic or unhelpful. The recipient and the therapist then work together to make changes.

Once the person learns to identify negative patterns, they then learn how to replace these negative thoughts with positive ones during everyday events. This isn't always easy but using CBT techniques you can try out different behavioural approaches in real situations, which can help to bring about changes.

How does CBT work in relation to Fibromyalgia?

Cognitive behavioural therapy may be of benefit to some people with Fibromyalgia. Unlike other types of psychotherapy, it does not involve 'talking freely', or dwelling on events in your past. CBT tends to deal with the 'here and now' - how your current thoughts and behaviours are affecting you now. CBT is problem-focused and practical.

CBT may actually help to ease pain symptoms. But it can also help you to take control of the extent to which pain, tiredness, or other symptoms interfere with your life.

CBT involves assisting persons with FMS to self-manage their disease by learning and applying a range of cognitive and behavioural techniques.

For example, techniques such as relaxation therapy, coping skills, cognitive pain management, and eliciting social support have been shown in several clinical trials to reduce symptoms and improve quality of life.

How to find a CBT Therapist

You have two routes you can go down. Firstly you could seek help on the NHS. This will involve initially speaking with your doctor and asking to be referred to a CBT therapist. Your doctor is likely to be supportive of your taking the management of your illness so seriously. You will then receive an appointment for an initial assessment during which the therapist will assess your needs. Unfortunately due to the high demand for CBT on the NHS you could be waiting more than 6 months for a series of treatments.

Alternatively you could go private. Again your doctor may be your first port of call for recommending a therapist. You could also ask around for personal recommendations. Due to a lack of qualified CBT therapists you should be prepared to travel up to 30 miles to find a good therapist – this will be worth it though. Sessions are not cheap – you could be looking at somewhere of around £40 per session of 30-45 mins. Although the good news is that you are likely to get an appointment within a week.

As we have stated, CBT might not be for everyone, but as a charity we are aware of a number of people who have literally been able to get their lives back on track after their diagnosis thanks to CBT. So keep talking folks!!

.uk

TEN MEDWAY GPS APPOINTED TO SHADOW BOARD

Medway Commissioning Group has appointed 10 GPs to its board. I am delighted to report that between us we have more than 230 years of cumulative experience as doctors in the NHS in Medway.

Although the GPs elected to the board will be taking a more proactive role, and devoting some of their working week to commissioning, we very much represent all GPs and other practice staff including nurses and practice managers in Medway. And following the publication of the Future Forum’s report into the government’s listening exercise into the reforms of the NHS, we will push ahead with our plans to widen the Board to include other clinicians and lay people. We have also been working with Medway LINk on our vision, values and aims.

Under the government’s plans for changing the way the NHS works, responsibility for commissioning most health services will transfer from Primary Care Trusts to newly formed clinical commissioning groups – groups of local family doctors and other clinical professionals like hospital doctors and nurses - who will work together to plan and buy healthcare for their local communities. The reforms are subject to parliamentary approval.

An indication of the progress of clinical commissioning in Medway is being chosen as one of the first in the country to take part in the “GP pipeline”, a pilot development and assessment programme for new clinical commissioning groups which is likely to be rolled out across the country. Our ambition is to use our first hand experience and understanding of patients and the care they receive to build on and make systematic improvements to the planning, commissioning and delivery of healthcare in Medway. In turn this will lead to improvements in the quality of care for patients and their health and wellbeing.

Medway Commissioning Group’s Board serves on NHS Medway’s Commissioning Committee.

The Medway Commissioning Committee reports to the NHS Kent and Medway Board which is overseeing the work of the cluster of the three primary care trusts (PCTs) in Kent and Medway.

The Board and their portfolios are:

Accountable Officer / Acute - Dr. Peter Green

Deputy Accountable Officer / Acute / OD - Dr Nathan Nathan

Acute - Dr Prabhat Kumar Shahi

Community - Dr Dudley Hubbard and Dr SK Patel

Mental Health - Dr Awadh Jha and Dr Tamil Selvan

Council - Dr. Gill Fargher

Communications and Engagement - Dr Shariq Lanker

Quality, Assurance and Informatics - Dr Manpreet Pujara

Finance Reporting Development - Dr Nathan Nathan, Dr Manpreet Pujara and Dr Shariq Lanker

Dr Peter Green

Chairman

Medway Commissioning Group

E-SOLUTION TO IMPROVE CARE AND SAVE MONEY

A new electronic document transfer system, Docman EDT, is expected to achieve significant improvements to the quality of patient care, along with time and cost savings for GP practices and hospital staff in Medway.

Discharge summaries and clinic letters will be securely transferred by the hospital directly onto the Docman system used by GP practices via Docman EDT, rather than being printed, posted and then processed by practice staff.

The system, which is expected to go live in July, will reduce the risk of information being incomplete as well as improve the delivery of clinical information to your GP. It will halve the amount of time spent by staff on administration at both the hospital and practices, and use far fewer natural resources such as paper.

Figures so far indicate that the system will save 8,000 hours a year of staff time, and £64,000 a year, as well as reducing the carbon footprint of the NHS.

Contact: labukun.kosefobamu@

CHRONIC PAIN PATHWAY RELEASED IN AMERICA

At a Press Conference in Washington DC on June 29th 2011 Jan Fevero Chambers released a thought provoking paper from the Institute of Medicine’s (IOM), "Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research." The report was released simultaneously throughout America via a webcast.

Research has established that Chronic Pain affects up to 1 in 4 Americans. The cost to Industry is estimated at $635 billion dollars per year. It is also estimated that throughout all of the American states there may be as many as 10 million Fibromyalgia sufferers Jan Fevero Chambers went on to say that “For the first time, Fibromyalgia and chronic pain patients now have a strong united voice that outlines a blueprint strategy for health care professionals to adequately prepare and guide patients in self-managing chronic pain.”

In the UK support groups and National organisations have long been arguing that a strategy effective in treating chronic pain should be developed and used throughout the NHS. This would take out the elements associated with ‘Post Code Lotteries’. Where you live should not determine what treatment you get if you suffer from Chronic Pain.

A highlighted edition of the report can be found at the following web address:



PERSONAL INDEPENDENCE PAYMENT (PIP) FROM 2013

(REPLACING DLA)

Disability Alliance has a detailed factsheet that sets out its proposed descriptors that will measure someone's ability to carry out 'daily living activities' or 'mobility activities' that will determine whether they have a 'limited ability' or 'severely limited ability' to carry out those activities. This will be updated by them as and when more details are known.



FIBROMYALGIA - GUIDELINES FOR THE DISABILITY ANALYST.

DOCUMENT RELEASED UNDER THE FREEDOM OF INFORMATION ACT

This is the training and development manual for the people carrying out the medical assessments for people claiming ESA. This is the specific chapter dealing with fibromyalgia. It has been produced by the Office of the Chief Medical Adviser.



Editor’s Note: The above two pieces of information were received from UKFibromyalgia

DISABILITY ALLIANCE FACTSHEETS

These factsheets provide basic information about benefits, tax credits, social care and other disability related issues for claimants and advisers. They are free to download.



PAYMENTS COUNCIL TO KEEP CHEQUES

A while ago the Payments Council announced that they intended to stop the use of cheques by 2018. A large number of people and organisation, including charities, were totally against this. There was a period of consultation, during which people could make known their thoughts on this. We wrote to the Payments Council expressing our concern, as, along with other charities, our main source of income comes via cheques. In our case this is through our voluntary donation system of membership and this produces at least half of our income. It would be extremely difficult for members to make payments in any other way.

We are pleased to announce that we have had a letter from the Payments Council, acknowledging our objection, and stating that they will not now been stopping the cheques system. The only change they have made is that the Bank Cards are no longer to be cheque guarantee cards. Keeping the cheques in place is good news for us, and we are pleased that this decision has been made.

BLUE BADGE RENEWAL

I lost my Blue Badge. No, I didn’t drop it, or mislay it, and I didn’t have it stolen. I’ve had one for nine years, and have looked after it carefully, using it because I needed it. So what has happened? Well, it came up for its three yearly renewal, so I filled in the form as usual, sent it off with all the information necessary and awaited a new Badge. Silly me, it wasn’t that easy. I don’t claim DLA Mobility. Maybe I should, but I cannot go through the trauma of all the reassessments, especially with the new changes. Any stress makes the Fibro go into overdrive, and I want – no, I need – a life. If I did get the DLA Mobility at the Higher level I’d get a Blue Badge automatically, apparently. Of course, I’m saving the Government money, but so what!! Anyway, back to the point, my application was refused. So no Blue Badge!

I was so distressed on the day I received the letter that I decided I couldn’t fight it and would have to restrict what I do and live with it. The next day anger crept in by the back door. I had to fight it. I need it. So I rang Medway Council who, after we had gone through the form that my Dr had completed, said that I needed to get my Dr to write a letter. I had, three weeks before, been to see my Dr to complete the form with her. Now, it wasn’t her fault, I must state here. The forms have yes and no answers, such as ‘Does she need someone with her all the time?’ – well, indoors I don’t, but outdoors I do, so the answer is no, I don’t need someone with me

all the time. But hang on, I’ve now been told that it is to do with whether I need someone with me outdoors and particularly when going somewhere new. If, I’d known that, the answer would have been yes. ‘Can she walk?’ – well, I’ve just walked from the waiting room into the surgery, so, yes, I can walk. There’s no leeway to say that I have very severe pain in walking – can only walk short distances, and some days not at all. I have a scooter and a wheelchair for the bad days. Did I buy these and put myself in them for the fun of it! Well, of course I did, hilarious, isn’t it! Just, in case you believe that, I’d better confirm, that, no, I wouldn’t have done it if I hadn’t needed them. So Medway Council suggested I asked the Dr to write a letter which she very kindly did. Two weeks later I rang Medway Council again to ask what was happening. They had got the letter and it was awaiting attention. The very next day, the Drs surgery rang to say they had received another form for them to fill in. They were as mystified as me. I rang the Council, yet again, to be told that they definitely wanted another form from the Dr – it was procedure!! Luckily, my Dr and the staff at the surgery are really helpful, but it just seems such a waste of everyone’s time, not to say all the stress it is causing me.

My previous Badge expired on 17th June, and as I was going on holiday on 14th and really needed it whilst away, I reapplied a month early. Two months later I still haven’t got a Badge. My life is totally restricted, and I am near to tears when we try to go out. Instead of being able to walk into buildings that we can park outside of, such as hotels, shops, friend’s houses, restaurants, and the list goes on, we now have to park much further away and I have to use the wheelchair or scooter to get there. It’s mostly the wheelchair as this can be folded and stored away easily. So much for exercise! I’m not a happy bunny, as you’ve already guessed, and I’m not trying to cheat and lie myself into getting something I don’t need or deserve. I just need my Blue Badge to be able to lead a better life than the one I am now required to lead.

There’s no need to worry if you are on the higher level of DLA Mobility, but if you’re not, it seems to be becoming a real problem to get a Badge. I do understand that ‘they’ are trying to stop those people from getting a Badge who really don’t need them, but, as always with these things, including the changes in Benefits, it’s those who are more vulnerable who end up on the losing end.

Well, there’s one thing this experience has taught me and that is that I try to live up to how others think I am, and, clearly, from this experience, I’m not!! Without the Blue Badge, I’ve had to live a much more restricted life. Moan over!

Stop Press: I did get my Blue Badge back after a month without it. It’s now become my most treasured possession – well, after Ron, of course!!

A factsheet on the Blue Badge Scheme can be found at:



PERSONAL STORIES

It is good to see members sharing their personal stories, and I would like to encourage more of you to send in your own stories. It is always good for members to read about others and particularly if it is about a positive experience.

You never know when something you have felt, or tried, that has helped you, will help someone else. Don’t be discouraged if you have difficulty putting things into words, just give the bare bones and I will do the rest.

NEWSLETTER ITEMS

Items for inclusion in this newsletter are very welcome, but please note that the newsletter is about Fibromyalgia and related information, for those with Fibromyalgia, and their supporters. It would be helpful, if you are able, if you can send it via email.

The inclusion of articles and features in this newsletter does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given in this newsletter, should always be discussed with a medical professional. The group/Association cannot be held responsible for omission and /or errors.

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