16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.ukWebsite: www.fibrosupportmedway.ik.com

February 2010 ISSUE 45

Next Meeting: Thursday 25th March, at St Stephen’s Church Hall, Maidstone Road, Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2010

Thursday 25th March - Helen BuckinghamDirector of Commissioning & Performance for NHS Medway, plus a lead commissioner for long term conditions, and possibly a clinicianThursday 27th May – Pam Wright on Music & Fibromyalgia (postponed from last November)Thursday 22nd JulyThursday 23rd September Thursday 25th November

All at the above address and time.

JANUARY MEETING

Following our AGM we heard from Angela Self, an Occupational Therapist at Medway Council. Full details in the next newsletter.

FUNDING NEWS

See page 13 for details of funding received from Cllr Andy Stamp’s Ward Improvement Fund.

DROP-IN/SURGERY

See enclosed flyer for details of a Drop-In event at the Sunlight Centre.

RENEWAL OF MEMBERSHIP

Don’t forget to renew your membership if you haven’t already done so.

AWARENESS DAYSaturday 8th May

Don’t forget to put this date in your diaries and bring along your friends, relatives, and anyone interested in finding out more about Fibromyalgia – even your GP, if interested. As for last year’s event, there will be tea/coffee, biscuits, and cakes all available free. This year the event will be held at Thomas Aveling School, Warren Wood, Rochester. More details to follow.

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.

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.

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NEWSLETTER

FUNDING UPDATE

The balance in our Bank Account at the end of November 2009, was £4541.40.

Expenditure since then has been, £512.01 for photocopying, £273.25 for Sales, £860.70 for Stationery, £38.33 for Sundries, £174 for hall hire for special event, and £489.46 for postage.

This leaves a total of £2193.65.

At the January meeting and during the past two months, we raised, £36 on the raffle, £9.80 for books, £24.50 for pens, £16.17 for refreshments, £42 for CDs, £6 for plugmates, £1121 in donations, £170 for sale of 024 Fibromyalgia, £13 for Car Stickers, and £4.10 for Bus Stop Game. This gives a total of £1442.57 to be deposited in our bank account.

This gives us total of funds of £3636.22.

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 have received.

NEW AWARENESS CAR WINDOW STICKERS

Our Awareness Car Window Stickers are £1 each. It is important to raise awareness of this condition. Please do buy one and display in your car to help raise awareness. Send an SAE and £1 for each one to 16 Barberry Avenue, Chatham, Kent ME5 9TE, or buy one at the meeting.

NEW NORTH KENT GROUP

The first meeting will be on Wednesday 17th

February 2010 (Speaker: Rita Holme, Counsellor) at The Church Hall, Christchurch Road, Dartford DA1 3DH from 1.30pm - 3.30pm (near Dartford Grammar Schools), (ample car parking facilities available)This Group is not only for those living in Dartford but also those living in the surrounding areas of Gravesend, Bexley, Sidcup, Erith, Eltham, and Swanley. Contact: Philomena (Phyl) on 01322 528108 or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Maidstone & Weald Support Group meet at the Maidstone Community Support Centre, Marsham Street, Maidstone from 1.30pm to 3.30pm on February 17th. Contact: Heather Hammond on 01580 715503 or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE MEETINGS

At Phoenix House, Central Avenue, Sittingbourne. Meet on the 1st Thursday in February, April, June, August, October and December. 12.30-2.30pm. Contact Maria on 01795 873379.

SHEERNESS MEETINGS

St Peter’s Church Hall, St Peter’s Close, Sheerness.Meet on the 2nd Friday in the same months as Sittingbourne but at 12.15-2.15pm.Contact Maria on 01795 873379.

IF YOU CAN’T ATTEND MEETINGS

If you can’t attend meetings but you live in any of these areas and wish to join any of those groups (those already signed up to the Medway Group can still stay with this Group as well for as long as they wish), please let the relevant Co-ordinator know.

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CHRONIC PAIN MANAGEMENT IN EAST KENT 2010 AND BEYOND……

By Val Conway, Consultant Nurse Chronic Pain, a talk given at the Pain Roadshow in

Canterbury, to East Kent Hospitals University NHS Foundation Trust

Members in November 2009, that was attended by Margaret, Ron, Peter, Jean &

Alison.

Val started her talk by comparing the numbers of UK residents affected by chronic pain to other significant problems. She said that 7.8 million were affected by chronic pain, whereas 3 million were affected by coronary heart disease, 3 million had diabetes, and 1.7 million were unemployed.

What is Pain?

The word ‘pain’ is derived from the latin word ‘poena’ which means punishment, indicating that it was once attributed to such things as demons, evil humours and dead spirits. It is:

an unpleasant experience.. a sensory and emotional experience. associated with injury or disease..

Chronic Pain

Chronic Pain is a pain which has lasted for longer than 3 months

Val explained that there is a chronic pain cycle and this includes:

Headache Anger Irritability Sleeplessness Worry Stress Anxiety Decreased Pain Tolerance Headache

Those affected by chronic pain will find that this cycle is continuous and at any one time they can be at any point on this cycle, as one point can lead on to another.

Effects of Chronic Pain

Val explained the effect that chronic pain can have on sufferers and said that it affects all aspects of life, including:

Loss of independence Loss of salary Loss of self esteem Loss of health benefits Missing special occasions Loss of social element Loss of personal achievements Losing touch with loved ones Feeling a burden Loss of me-time Loss of contact Inability to achieve goals Loneliness Loss of motivation Inability to maintain relationships Feeling of isolation Feeling left out Loss of personal relationships

Factors which influence the pain experience

Gender age Nociception memory of previous experiences psychological factors communication skills social factors cultural factors pain tolerance variation

Assessment

When assessments are done notes are taken on the type of pain, where the pain is, whether it is nerve pain, and whether sleep, mood and feelings are affected. Also taken into account are feelings of isolation, whether the patient is employed, and whether they have any hobbies.

Treatment Options

Val explained that there are treatment options available, and these are:

Drugs

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TENS Acupuncture Alexander Technique Tai Chi Physiotherapy Hydrotherapy Lifestyle Advice/Support Education & Empowerment Psychology Occupational Therapy Patient Support Groups Pain Management Programmes Expert Patient Programme Intervention - epidurals, nerve blocks Surgery High Tech. Implants

Chronic Pain Complexity

When treating chronic pain, account has to be taken of the Physical Needs, Psychological Needs, and Social Needs of Patients.

Chronic Pain Services East Kent

Val explained the service that is available in East Kent, how it will be delivered, and how it will benefit patients.

ICATS

She explained the Integrated Clinical Assessment and Treatment Service that is available in East Kent. This service can be also accessed by Medway Patients through Choose and Book.

Benefits

The benefits of this service are that there is a single Point of Access, you can be seen nearer to home, you can be seen by the most appropriate clinician, and you can be seen sooner.

Summary

In summary, Val pointed out that: The incidence of Chronic pain is

increasing Services need to meet complexity and

demand

There is a need to increase education and empowerment of patients

There is a need to raise awareness and integrate with patients and public….

More events like the Pain Roadshow are needed!!!

References

Lord Darzi ReportNHS PlanPain SocietyChronic Pain Coalition PolicyPain toolkitEssence of Care-Pain NSF for long term conditions

THE INTRUSION OF A CHRONIC ILLNESS

A transition to living well with a chronic illness

A talk given at our November 2009 meeting by Rita Holme

Rita started by telling us that she is a State Registered Nurse, a Support Officer with the MS Society, a Counsellor with Certificate in Counselling, a Counsellor with a Diploma in Integrated Counselling (Humanistic & Psychoanalytic Therapy), and a Member of Pychosexual Nursing Association. She has done Specialised Training in CBT (Cognitive Behavioural Therapy), Change, Loss & Bereavement, T. A. (Transactual Analysis), and Trauma.

The consequences of living with a chronic illness

People with chronic conditions have to confront many challenges in their lives such as:

• Fatigue • Chronic pain • Anger • Grief and loss• Decreased socialisation• Decreased mobility

Diverse medical conditions including: Chronic fatigue syndrome, psoriasis,

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fibromyalgia, leukaemia, MS, arthritis, chronic pain, cancers and lymphoma have these same challenges.

The intrusion of a chronic illness in a relationship

Factors that influence the effect an illness may have in a relationship are: Pre diagnosis ‘assumption of life’ Post diagnosis ‘assumption of life’ Different challenges for men & women Loss of identity in society and family Individual Core Values Relationship dynamics

Six Psychological Stages of change and loss• Shock - This can’t be happening to

me!• Denial - This isn’t happening to me• Confusion - Why me?• Anxiety - What’s going to happen to

me?• Anger - Why can’t you fix what’s

happening to me• Relief - Thank goodness I thought it

was going to be worse (Cancer)

Five Stages of Grief• DENIAL An inability to believe what

has happened• ANGER At the loss, can be directed

inwardly at self or outwardly to others

• BARGAINING ‘What if’ and ‘if only’ scenarios

• DEPRESSION Being overwhelmed by the situation, withdrawal and shutting down, can be on a physical or psychological level

• ACCEPTANCE Acknowledging the loss and its repercussions on one’s life, but this does not necessarily mean you are OK with it

Types of psychological support • Family and friends• Befriending

between people affected by the illness • Support group facilitators

With active listening training

• Counsellors with a Certificate in Counselling: Qualified training in counselling skills available only for voluntary non-paid posts

• Counsellors with a Diploma in CounsellingCan be employed as a qualified counsellorMember of statutory body i.e. BACP (British Association of Counsellors &Psychotherapists)

• PsychotherapistSpecialist training in recognised therapeutic orientation

• CPN Registered Community Psychiatric Nurse

• PsychologistDegree qualification in Psychology - usually to Doctorate level

• PsychiatristQualified Doctor with specialised training in Mental Health who is able to prescribe appropriate medication

Keeping your relationship going

Communication barriers occur when:• Fear and anxiety of creating more

upset for each other arises• Misunderstanding what the other

person says and means• Not knowing what your ‘wants’ and

‘needs’ are• Inability to verbally express your

‘wants’ or ‘needs’

MALE V FEMALE

Loss of identity or role within the family

Man = provider, protector “I am what I do”

Woman = the carer - not the cared for

Each person is an individual

We all deal with stress in a different ways. Partners may have conflicting coping mechanisms Adapting to living with a chronic illness

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• I take control of my life: My illness does not

• I live alongside my illness: I am still me.

I just happen to have Fibromyalgia.

Living Life to the Full CourseAnxiety Control Training by Dr Chris Williams can be found at www.livinglifetothefull.com

Assertiveness Means

• RESPECTING MYSELF: Who I am and what do I do.

• TAKING RESPONSIBILITY FOR MYSELF: How I feel, what I think and do. For example, "I feel angry when you put me down" is more assertive than "You make me feel angry when you put me down“

• RECOGNISING MY OWN NEEDS AND WANTS INDEPENDENTLY OF OTHERSThat is being separate from what is expected of me in particular roles, such as 'wife’, 'husband', 'lover’, 'daughter’, 'son’.

• MAKING CLEAR ‘I’ STATEMENTS about how I feel and what I think. For example, "I feel very uncomfortable with this decision". "I think that it is a good idea to draw up a plan of action".

• ALLOWING MYSELF TO MAKE MISTAKES: Recognising that sometimes I will make a mistake and that it is OK to make mistakes.

• ALLOWING MYSELF TO ENJOY MY SUCCESSES: Validating myself and what I have done and sharing it with others.

• CHANGING MY MIND: If and when I choose to.

• ASKING FOR ‘THINKING IT OVER' TIME. For example when people ask me to do something and I need time to consider whether or not to do it, I could say, "I would like to think it over and I will let you know my decision by the end of the week".

• ASKING FOR WHAT I WANT, rather than hoping someone will notice what I want and moaning later that I didn't get what I wanted.

• SETTING CLEAR BOUNDARIES. For example, "I know that you would like me to visit you, and thank you for inviting me. I am however unable to come this weekend and would like to visit you later in the year".

• RECOGNISING THAT I HAVE A RESPONSIBILITY TOWARDS OTHERS, rather than being responsible FOR others. As parents we do have responsibility for and towards our children, which is different from having responsibility towards each other as adults.

• RESPECTING OTHER PEOPLE and their right to be assertive.

Self Management

• Symptom management (being a good historian, clear and assertive)

• Education• Relaxation skills• Counselling • CBT on line• Being realistic and kind to yourself• Keeping your identity: I have Fibromyalgia

Not a sufferer with Fibromyalgia• Shrinking the monster

Activity Sheet

Rita suggested making an activity sheet that would help to plan the day and enable pacing.She also suggested making a list of 20 good things about yourself to look at regularly.

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Useful Information

Make a Directory of where you can get information and support such as:

www.livinglifetothefull.comwww.moodgym.anu.edu.auThe support group – www.fibrosupportmedway.ik.comNewsletters

Additional Points made by Rita during her Talk

Rita explained that illness is a loss. How you deal with the unpredictability of it is difficult and challenging. It is natural to go through loss after a diagnosis as you are in a state of limbo. Getting the best support enables you to get the best quality of life that you are able to. You are the expert of your own illness. A diagnosis is essential as it means that you can then move on.

Breathing control is essential. Learn what is in your control as getting stressed will aggravate the condition. You need to know about your symptoms and get advice on symptom management.

Rita suggested that visualisation relaxation CDs will help. You can visualise your own scene but ensure that it is a helpful one as the wrong visualisation can have the opposite affect. For example you may visualise a special holiday or day out, a day in the country, or just a relaxing scene.

Editor’s Note: Ron pointed out that I have learnt to cope with the condition well and that he has watched me do this. Rita asked me how I did this and I realised, once I had thought about it, that I do practice some of the points that she had talked about without noticing it. I do take a deep breath before I do things, such as answering the telephone, replying to people, and voicing my opinion. I do also prioritise. If I have a lot to do, I put one thing in my diary each day that I know I can achieve. If I can’t actually do it then, at the end of that day I move it to another day. I would not be able to run the support group

without this sort of mechanism in place as the work, if I thought about it all in one go would seem insurmountable. I don’t feel overwhelmed when I see just one target to reach each day. The secret is to write it down so that you can see it is achievable.

Our thanks go to Rita for an excellent and extremely helpful talk. Rita is unable to take private clients but recommends another Counsellor, Lesley Bradley, mobile phone number 07961863890.

THE BENEFITS ADVISER

The Benefits Adviser, launched in 2008, provides online advice on entitlement to 28 DWP benefits, pensions and credits, and how to claim them. It also has links to jobsearch and State Pension forecasts.

The service has now been enhanced to allow customers to obtain and estimate of the amount of benefit they may be awarded. In addition, customers will be able to enter potential new circumstances to see how this would affect their benefits, for example if they would be financially better off in work. The service will make it clear that financial information given is an estimate only.

The service was developed using continuous customer feedback and with input from various advisory groups. Since it was launched, the service has received more than 1 million visitors.

Customers can access the service by visiting www.direct.gov.uk/benfitsadviser

MEDICINE GUIDEShttp://medguides.medicines.org.uk/default.aspx

Medicine Guides provide members of the public with up to date, reliable and understandable information about medicines.

They can help you to:

Make informed decisions about your health and health care

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be more involved with healthcare professionals in choosing treatments; and

understand how best to use or take your medicine

FIBROMYALGIA CONFERENCE AND PAMPER WEEKEND

April 23rd-26th 2010 (Friday to Monday)

Jeanne Hambleton, Regional Co-ordinator for Berkshire, Buckinghamshire, Oxfordshire, Hampshire, Isle of Wight, Surrey, Sussex and the South West, has organised a Fibromyalgia Conference at Southdowns Holiday Village, Bracklesham Bay (close to East/West Wittering), Chichester, West Sussex, PO20 8JE (www.bracklesham.co.uk) for a long weekend on April 23rd to 26th.

She stresses that this is a Holiday Village, not a 5 star hotel. The chalets have all been refurbished to a good standard and have en suite and heating. The centre has a good reputation for its food and she is planning on sole occupancy for the weekend.

Jeanne says that they have some great speakers on interesting subjects. Along with Dr Ernest Choy from  Kings College Hospital who is talking about the understanding of new advances in Fibromyalgia, Dr Peter Fisher, Clinical Director and  Research Director from the Royal London Homeopathic Hospital and physician and homeopath to Her Majesty the Queen Elizabeth II, has agreed to give a presentation.  

Another important speaker is Dr Nick Avery, a leading specialist in the world of CAM (Complementary & Medicine). His particular areas of medical interest include asthma, eczema, Chronic Fatigue and Irritable Bowel Syndromes as well as the use of acupuncture in the treatment of migraine, Osteo-arthritis and smoking cessation.

Dr Ian Treasure, a forensic scientist, is a world leading expert on nutrition and how it affects mood. Dr Nina Bailey will be speaking on digestive health and also chronic

fatigue syndrome. Dr Maged Agour will give a presentation on his research into sleep disorders.

The controversial Lightning Process as used by Esther Rantzen for her daughter Emily who had ME/CFS will be presented by Ben Oakley an advanced practitioner of this Australian process.   Some workshops still have to be finalized but they will have a session on benefits question and answer, Fibromyalgia research, EFT, hypnotherapy, a laughter workshop, yoga, Tai Chi and Pilates, new micro current treatments, antioxidant treatments, not to mention the free pamper tasters.

Last booking date is officially February 23rd.   The venue wants confirmation of numbers and the rest of their money by the end of that month.  

To book contact Jeanne Hambleton, email: jeannehambleton@mac.com or Telephone 0845 345 2410, website: www.fibropals.co.uk

Editor’s Note: Please let me know if you will be going to this Conference as it would be great to have some feedback from it to share with others through the newsletter.

WHAT MAKES A GOOD DOCTOR?By Robert H. Shmerling, M.D.

Beth Israel Deaconess Medical Center

Seeing a doctor for the first time is a bit like going out on a blind date: There's no guarantee that even a highly recommended doctor will be right for you. One reason - perhaps the biggest reason - is that people have different definitions of a good doctor. Finding a doctor whom you consider good starts with knowing what you value most in a doctor.

What Does 'Good' Mean?In my view, there are many ways a doctor can be good, so it's difficult to know what someone means when he or she says a doctor is good. For some people, being a good

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doctor is all about bedside manner, personality and communication skills. Other people value smarts, technical skills or expertise in a particular condition. Still others rely on credentials, such as where a doctor went to medical school or residency training. I've even known patients who care little about these other factors and instead care most about how the office runs, how quickly the phone is answered or how friendly the receptionist is.

The type of doctor may also determine how a person defines a good doctor. For example, many people I know say they don't care about a surgeon's bedside manner as long as his or her patients have outstanding results. Yet those same people might say that a good bedside manner is much more important for their primary care physician.

Your particular medical problems may also be key to the type of doctor you want. A person with a rare disease may value a doctor's knowledge about that disease, rather than the doctor's personality or other factors.

Role Models of Yesterday and TodayIn the media and in pop entertainment, the "good doctor" is usually wise, patient and unhurried. Dr. Kildare and Marcus Welby are good examples from long-running television shows during the 1960s and 1970s. A more recent and notable exception is Dr. House, the unconventional and brilliant doctor on the television show of the same name. While we could debate whether he's actually a good doctor in the fullest sense, my guess is that few patients in the real world would tolerate his unprofessional behavior.

What Qualities Make the Ideal Doctor?If you could have it all, what qualities would your doctor possess? Ideally, they might include:

Kindness Compassion Intelligence Humility Excellent communication skills Availability Friendliness

A sense of humor

Perhaps you can think of other attributes that make a good doctor. But these would be a good start.

How Smart Is Your Doctor?Perhaps the biggest myth about a good doctor is this: They have to know it all. In my experience, rather than a doctor knowing a lot, it's more important for a doctor to know what he or she doesn't know, or to know when to ask for help.Some of the smartest doctors I know have made serious errors, at least in part because they did not seek consultation from others. That's why I listed humility as a quality above. It's important to recognize your limitations. That's particularly true in medicine, because no one can ever know it all.

The Bottom LineThe search for a good doctor is different for each person. Here's some general advice that might serve you well:

Who's talking? The recommendations of trusted friends, family or other doctors are worth a lot.What are the doctor's credentials? Most states have a list of licensed physicians online with information about medical training and board certification. Some states even offer information about malpractice claims and disciplinary actions against a doctor.How's the service? When you call for an appointment, is the person on the phone friendly, helpful and interested in your satisfaction?How was the appointment? Did your doctor listen to you? Your doctor should answer your questions in a way that you understand and ask you if you have any other questions.Did your doctor ask for your input? Communication about medical care should be a two-way street. The days of doctors telling patients what to do are long gone. Good doctors offer information and recommendations but honor the preferences of their patients. The only way to find out is to ask you what your preferences are.

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Is your doctor ever in doubt? Your doctor should admit uncertainty. And there should be a "plan B" if things aren't going well. In some cases, this means getting a second opinion or referring you to a specialist for consultation.

If the answers regarding your doctor are positive, then you're a lucky patient indeed. You've found a good doctor. And that's no myth. Robert H. Shmerling, M.D. is associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School. He has been a practicing rheumatologist for over 20 years at Beth Israel Deaconess Medical Center. He is an active teacher in the Internal Medicine Residency Program, serving as the Robinson Firm Chief. He is also a teacher in the Rheumatology Fellowship Program.

Reprinted with permission from Aetna InteliHealth and Harvard Medical School (www.intelihealth.com). Created by the Faculty of Harvard Medical School. Copyright 1996-2009.

UK FIBROMYALGIA ALLIANCE

The UK Fibromyalgia community is currently quite complicated. There are two national charities: FMA UK and FibroAction. There is also UK Fibromyalgia, producing FaMily magazine. Then there are also over 100 dedicated local & regional Fibromyalgia support groups, working tirelessly to help sufferers and raise awareness. These support groups are all independent charities, whether they are registered charities or not and whether they are working with FMA UK, the NHS or completely independently.

UK Fibromyalgia feels strongly that the entire UK Fibromyalgia community should coalesce around a common strong message, with the same aims and objectives. They all need to start "singing from the same hymn sheet" to make a real difference for Fibromyalgia in the UK.

UK Fibromyalgia has proposed the set-up of a

UK Fibromyalgia Alliance, which they hope can become the rallying point for all the various individuals, groups and charities in the UK Fibromyalgia community. If a majority of the UK Fibromyalgia community make a strong commitment to a common set of aims, then politicians and the medical community will have to sit up and take notice of the agenda they set.

The UK Fibromyalgia Alliance will be a coalition of member organisations, all with their own structure and tasks, but who agree to work together to promote the aims and objectives of the Alliance, within a transparent and accountable structure.

The UK Fibromyalgia Alliance Manifesto

Aims

1) That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.2) That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments. 3) That all people affected by Fibromyalgia in the UK should not be subject to discrimination because of the condition, including discrimination by employers, medical professionals or the state.

Objectives

1) To create an Advisory Board for the UK Fibromyalgia Alliance made up of Advisory Board Members, advisers and experts from the member organisations, so that all these experts can benefit the whole UK cause and community. 2) To develop an evidence-based integrated care pathway (ICP) for the diagnosis and treatment of Fibromyalgia in the UK. This would involve organising a task force of Alliance members and Advisory Board members to oversee the development of the ICP. (An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the

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NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.)3) To work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This would probably be through a combination of publicity, events, use of current contacts and use of the All Party Political Group for Fibromyalgia.4) To develop basic evidence-based information on Fibromyalgia that is agreed by the Advisory Board of the UK Fibromyalgia Alliance, that can be published by the Alliance members jointly and that can be used by any advisory members as the basis for their own information packs (i.e. a consensus on Fibromyalgia that can be used so we are all "singing from the same hymn sheet").5) To work to get regional Fibromyalgia multidisciplinary clinics set-up across the UK. In 2007 The European League against Rheumatism (EULAR) suggested that optimal treatment requires a "multidisciplinary approach with a combination of non-pharmacological and pharmacological treatment modalities tailored according to pain intensity and function. Associated features such as depression, fatigue and sleep disturbance should be in discussion with the patient".

Editor’s Note: The Fibromyalgia Support Group (Medway) has signed up to this Alliance, as has Fibroaction.

FEEDBACK REQUIRED BY CHRONIC PAIN SUFFERERS

Kent LINk would like feedback on services for sufferers of chronic Pain “It has been estimated that 7.8 million people in the UK now suffer with moderate to severe pain that has lasted over 6 months. Over one third of households have someone in pain at any given time” according to the Chief Medical Officer’s (CMO) report ‘Pain: Breaking Through the Barrier’.

The CMO reports that in 2006, over a third of chronic pain patients in the United Kingdom

reported inadequate control of their pain. The report suggests that “an ideal service would have links between the various elements of care and those who provide them, with clear straightforward pathways based on highly variable patient need”. In response to concerns raised by LINk participants regarding services for sufferers of chronic pain in Kent, the LINk is investigating experiences of people suffering chronic pain, both in hospital and in the community. What chronic pain services are available to you in your local area? Are these easily accessible to you, if not why not? How have these services helped you deal with chronic pain? What could have been done to improve your experience? If you are able to provide personal experiences relating to any of the above questions then please visit www.themedwaylink.org.uk/index.php?q=510. For more information contact Sophie Swain, Kent LINk, Kent & Medway Networks,FREEPOST NAT 17761, Folkestone, CT19 4BR, email sophie@kmn-ltd.co.uk or telephone 07814 427281 / 01303 297050.

EX-MOTABILITY CARS.

If you know someone who would be interested in buying an ex-Motability Car, contact your local dealership to see if they offer this service. These cars are popular buys as you can get a car that has been looked after throughout the lease and has a full service history, which can take away the worry of buying a second hand car. Your local dealer can be found through the 'Find a Dealer' search on the Motability website:www.motability.co.uk

CARERS' LINE MEDWAYA free service for Carers in Medway

Medway Council understands the need to talk to someone outside their circle of friends and family about the pressure or stress involved in being a carer. Some carers may find it helpful to talk to someone who is independent, who can talk

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them through a problem, consider new options and find solutions. Many Carers find they need support with the emotional aspect of caring as well as practical help. Carers who want counselling support are able to contact the Carers line team of fully trained counsellors in confidence. Carers can talk over the phone, through a web chat facility on the website and can also arrange to meet someone for up to six free sessions of face to face counselling if they need to. The service is run for Medway Council by 'Care First', an independent organisation a 24 hours a day, seven day a week facility is offered.

To find out more access the service on 0800 197 4517 or go to: www.care-first.co.uk/index.php?section=69.

Before you can use the web chat  facility a password has to be obtained by emailing counsellingforcarers@medway.gov.uk  From Medway Carers Newsletter issue 22

YOUR LOCAL NHS AMBULANCE SERVICE IS CHANGING: please help us to get it right

South East Coast Ambulance Service NHS Trust provides ambulance services to around 4.5 million people – that’s more people than the entire population of New Zealand. We have 63 ambulance stations, more than 3,000 staff, cover an area of 3,600 square miles (across Kent, Surrey, Sussex and north-east Hampshire) and on average we receive an emergency call every minute of every day.

The way SECAmb is governed is changing because we are applying to become a Foundation Trust. Foundation Trusts are still part of the NHS, meeting NHS standards and providing free care when it’s needed, but we will be accountable to the public, our staff and governors (our ‘membership’) rather than central government. This is why it’s important that we involve local people and interest groups as we move forward.

We want the people we serve to have a say in the way we run our service, so we’re inviting you to become ‘members’ of South East Coast Ambulance Service (SECAmb). Becoming a member is simple, free and it’ll mean you’re supporting us as well as having your say about how we can make our services even better.

Membership doesn’t need to take up your time – you can just receive our free quarterly newsletter, with details of the latest developments in life-saving treatments and technology, useful tips, interesting public health information and real-life stories – but being a member will also give you the chance to get more involved if you want to. Members can also stand for election to our Council of Governors, and will be able to vote for the governors who will work with our Directors to shape SECAmb’s future.

The more people that get involved, the better we can be sure we’re providing the emergency and community services you need, so please join us and encourage your colleagues, friends and family to do the same. You can sign up online here: www.nhs-membership.co.uk/seas or phone the membership office on 01273 897840 for a membership form or more information. Thank you very much for your support and we look forward to welcoming you as a member.

HEALTH AND LIFESTYLE TEAM LAUNCHED

The Sunlight Development Trust was funded by NHS Medway to deliver a national initiative which aims to support people leading healthier lives. On 14 December 2009 the Health and Lifestyle Team was officially launched at the Sunlight Trust, Richmond Road, Gillingham. The 12 strong team are able to provide holistic one-to-one support and can help with anything from low self esteem to cutting down on alcohol consumption.

Referral cards will shortly be available in all GP surgeries, pharmacies, family and

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children’s centres etc., but at present referrals are taken from anyone in Medway who wants to make a health and lifestyle change. For more information or to access the service, contact Julie Collins, Sunlight Centre, 105 Richmond Road, Gillingham, ME7 1LX, email halt@sunlighttrust.org.uk or telephone 01634 888624

FUNDING FOR GP INFORMATION PACKS AND SURGERIES/DROP-INS

Cllr Andy Stamp, a Cllr for North Gillingham who is Lib Dem Candidate for the next Election, has agreed to give us, from his Ward Improvement Fund, £321 to send Information Packs to all Gillingham GPs and to hold 4 surgeries cum drop-ins in Gillingham during this year. I hope to monitor the effect of the Information Packs by feedback from members in that area, and should we be able to get funding for other areas, we may be able to run this throughout Medway in due course.

The surgery/drop-ins will be open to all members, friends, and families and anyone interested in Fibromyalgia. It would be good if you can publicise this to any interested parties including professionals.

You will be able to come along, have a cup of coffee and meet others and access information or just have a chat.

The first of these is at the Sunlight Centre in Gillingham on Monday 22nd February between 6.15pm and 7.45pm.

BENEFITS ADVICE WARNING

A company is offering free benefits advice. The company will visit, complete DLA, benefits and carers allowance forms on behalf of the individual. This company works on the basis that they will be paid 45% of any back pay received if the claim is granted. Often they get involved at the later stages of an appeal when there is a more lucrative pot of money available. The website is www.benefitanswers.co.uk and the only

address is a PO Box. It is PO Box 2040Preston PR5 9AL. Tel: 0845 6120 474

Please be aware if you were thinking of using this service that they will require 45% of any back pay and using this service is not a recommendation by this support group.

This abridged information came from Medway Carers Newsletter No. 23. 

DIAL (NW KENT)

DIAL (N.W. KENT) visits the Medway Carers Centre every Thursday between 10am and 2pm for advice on welfare benefits and disability/carers issues. (This is by appointment only). Please contact DIAL for an appointment or for general advice direct on 01474 321761.

This information came from Medway Carers Newsletter No. 23.

THYROID KENT

There is a Thyroid support group based in Kent. Full details of this, written by the Chair, Patricia Graham, will be in the next newsletter. The contact details are:Patricia Graham Chair, Kent ThyroidTel: 01732 368959Email: ogs@waitrose.comwww.kentthyroidsupport.net

INCAPACITY BENEFIT CHANGE-OVER DATE

An announcement has been made for those that are claiming Incapacity Benefit (IB) at present. The beginning of the government's delayed switch to Employment Support Allowance (ESA) will now be October 2010. No date has been given for how long it will take but it originally should have been for 4 years from 2009. Benefits and Work have said that they feel it could be 2015 before every case is transferred.

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RHEUMATOLOGISTS’ CONFERENCE

The featuring of Fibromyalgia as a major topic at the upcoming British Society of Rheumatologists’ conference from 21st to 23rd

April 2010 in Birmingham is a major step forward for Fibromyalgia sufferers as it brings Fibromyalgia to the forefront of those who lead in the diagnosis of Fibromyalgia in the UK.

The conference is attended by a wide range of professionals including Consultant Rheumatologists, Doctors in training, nurse specialists, researchers, academics, physiotherapist, GPs and students. The conference programme is varied and appeals to all healthcare professionals working with and with an interest in rheumatology.

HEALTH LIVING WEBSITE

A website promoting healthy living has been launched with tips on boosting happiness and well-being. The site www.liveitwell.org.uk is aimed at people who live in Kent and Medway, and has information on physical activities to keep mind and body healthy.

THE TREE OF LIFE: A CREATIVE RESPONSE TO ILLNESS

Chatham Library Saturday 27 March 2010 at 2pm

 A group of people affected by long term illness and various medical conditions, have been meeting to work creatively with their illnesses at Sunlight since April 2009. Their work tells stories of health, ill-health, diagnosis and acceptance and sharing moments of deep, meditational silence and healing.  Some of the group will be reading extracts from their work, and some artwork will be displayed in the library. More information about the group can be found on their

Webpage:  http://www.themomentisnow.org.uk The event is free but please contact Chatham library to book your place on 01634 337799 or chatham.library@medway.gov.uk

AWARENESS CAR WINDOW STICKERS

We have Awareness Car Window Stickers for sale. The price is £1 each. It is important to raise awareness of this condition. Please do buy one and display in your car to help raise awareness. Send an SAE and £1 for each one to 16 Barberry Avenue, Chatham, Kent ME5 9TE, or buy one at the meeting.

GROUP PENS FOR SALE

We have our own group pens for sale for £1 each. Please send a stamped addressed envelope with your money to the above address to obtain these easy to hold pens.

CHRISTMAS THANKS

Ron and I would like to thank all those who very kindly sent us Christmas cards and also those who gave us gifts. It is very much appreciated.

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.

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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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