Newsletter 16 Barberry Avenue, Chatham Kent me5 9TE



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NEWSLETTER

16 Barberry Avenue, Chatham Kent ME5 9TE


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

Website: www.fibrosupportmedway.ik.com


June 2010 ISSUE 47

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

Chatham ME4 6JE. 1.00pm to 3.00pm

********************************************





MEETING DATES FOR 2010
Thursday 22nd July - Dianne Stewart,
Traditional Acupuncturist from the Chronic Pain Unit at Sittingbourne Memorial Hospital.

Thursday 23rd September

Thursday 25th November
All at the above address and time.

MAY MEETING
Those of you who didn’t attend the May meeting or who left before the main speaker, missed a real treat.
Pam Wright, author of The Fibromyalgia Coach, came to talk to us about how music can help us to cope with Fibromyalgia. She has Fibromyalgia herself.

Pam was her usual bright, bubbly self, and her talk was both interesting and inspiring. Through the music Pam played it helped us to understand how different types of music can either be helpful to us or not, depending on the situation we are in at the time. Pam had us all smiling in no time, despite our pain.

There will be a full report of Pam’s talk (without the music, I’m afraid!), in the next newsletter.

FIBROMYALGIA AWARENESS EVENT
A full report of this event, with pictures, can be found on page 10 of this newsletter.

024 INCREASED PRICE
Unfortunately, due to the change in the exchange rate and the increase in Duty that we have to pay on 024 Fibromyalgia to bring it in from America, we have had to make the decision to increase the price to £12 each. We still cover a small portion of the cost and also the postage if you receive it by post from us.

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 March 2010, was £3339.74.
Expenditure since then has been, £144.90 for photocopying, £226.75 for 024, £24.31 for Stationery, £19.88 for Sundries, £40 for CDs, £78.80 for Special Event expenses and £57.48 for Refreshments.
This leaves a total of £2747.62.

At the May meeting and during the past two months, we raised, £27 on the raffle, £13.70 for books, £22 for pens, £36.68 for refreshments, £24 for CDs, £3.50 for plugmates, £224 in donations, £54 for sale of 024 Fibromyalgia, £11 for Car Stickers, £5 donation from Brenda for the sale of preserves and cards, £50 from the Halden W.I., and £4 for Bus Stop Game. This gives a total of £474.88 to be deposited in our bank account.

This gives us total of funds of £3222.50.


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. They are much appreciated

DONATION FROM HIGH HALDEN W I
We would like to thank the High Halden Women’s Institute for their donation of £50 to this support group.
They have donated it in support of their “valued” member, Brenda, who is a member of our group.

Those who attend meetings will know Brenda through her sales of preserves and cards at the meetings.



BBC SCOTLAND PROGRAMME ‘WHO’S CHEATING WHO’
If you have the internet this is an interesting programme regarding the new ESA benefit and the inconsistencies of the medical assessment.
http://www.bbc.co.uk/iplayer/episode/b00sjn3x/BBC_Scotland_Investigates_2010_Whos_Cheating_Who/

NORTH KENT GROUP
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. Meetings are held at The Church Hall, Christchurch Road, Dartford DA1 3DH (near Dartford Grammar Schools), (ample car parking facilities available)

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. Contact: Heather Hammond on 01580 715503 or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS
St Peter’s Church Hall, St Peter’s Close, Sheerness.

Meet on the 2nd Friday in February, April, June, August, October & December 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.

THE FIBROMYALGIA AND WORK PARADOX
Please Note: this article is non political, non party political and is not in any way critical of doctors or of the employment and support allowance system. it is for people with Fibromyalgia who can identify with the paradoxical situation described within, and who may need help to convey their situation to their own gp, benefit doctors and benefit officials
We support the Doctors and politicians who believe that long term sick and unemployed people would generally be better off returning to paid employment. There are undoubted benefits in terms of self esteem, money, better mental health and so on. This view has recently been translated into Government policy by the introduction of the Employment Support Allowance system which aims to review large numbers of long term sick and disabled people and get many of them off sickness benefits and into work – or alternatively on to lower levels of benefits as ‘normal’ unemployed people.
The remaining (‘genuinely’) disabled and incapacitated people would under the new system remain on long term sickness benefits (ESA or a special form of Income Support with ESA elements). Many of these people will also be encouraged to participate in ‘work-life’ activities such as training and job searching.

As a support group we have great admiration for the few people with Fibromyalgia who are able to carry on working (or who feel they simply have no choice but to carry on working), in spite of all of the pain, fatigue and other adverse symptoms associated with Fibromyalgia.

There is, however, a big reservation that we need to point out to the GPs, Benefits Agency doctors and to the politicians and policy makers. People with Fibromyalgia have the condition for life. It is possible - usually after a number of years - for Fibromyalgia sufferers to settle upon a number of treatments, therapies, drugs, diets and exercise regimes which will help stabilise their condition – and even to maximise their chances at living a relatively normal life. Our GPs are key in helping us in this quest. But a modicum of realism needs to be held by all parties. These improvements in Fibromyalgia outlook are usually hard won and modest in scale.

An important message we have for new members is to stop looking for a cure: there isn’t one!


Instead we encourage people to find a range of different things that help incrementally as well as eliminating as many ‘bad’ things as possible. One of the most important things our GPs can do for us is to help us identify and eliminate as many of the ‘precipitating factors’ which make our condition worse.
A very important ‘precipitating factor’ is poor sleep. Here our GPs can help to minimise the sleep problems which we all have (it is one of the few ‘absolute’ symptoms we have and as such is part of the diagnostic criteria of Fibromyalgia). Help might be given by prescribing drugs at night and/or by suggesting that very early morning starts (usually essential for getting a job) are best avoided.
Case example
One theoretical model we share with doctors is the notion of ‘vicious’ and ‘virtuous’ circles:

Susan is a single mother of two. She has Fibromyalgia but does not yet know it. She works part time in a packaging office. Her duties are light, but with her pain and fatigue and sleep problems she is taking more and more time off work, and she finds it hard just to run her own household. She is also getting worried about these symptoms as her GP cannot seem to get to the bottom of it. Susan finds it exhausting enough just to get through the day looking after her family. If precipitating factors are not kept in check, her pain, fatigue and her other symptoms will get worse and worse, leading to even worse sleep cycles; more hours spent trying to get her job done and less time and inclination for any exercise. In turn, this leads to Susan’s general condition becoming poorer and poorer. In this example Susan has also ‘relied’ on cigarettes and alcohol both to help her ‘cope’ with her symptoms and in a mistaken belief that sleep would be facilitated if alcohol is consumed in the evening. In this example, Susan’s symptoms become increasingly poor until she reaches a stage whereby she takes so much time off work on her ‘flare’ or worst days that she is made redundant on the grounds of incapacity. Until her cycle is broken with some positive intervention by medical professionals and some positive actions by Susan herself, her outlook is extremely poor.
The other side of this example is where the ‘virtuous circle’ can be established.
After Susan loses her job she already feels an improvement due the reduction in stress, the physical activity and the early starts which were a factor of her job. In terms of this model, some of the ‘precipitating factors’ of her Fibromyalgia were removed by the loss of the job. Susan also received some crucial further help and support from her GP at this stage. After a referral to a consultant rheumatologist, Susan (at last) has a diagnosis of Fibromyalgia. This by itself is a great relief to Susan, who had never heard of Fibromyalgia and had wondered if her symptoms were due to a life - threatening condition. Her GP starts her on a number of drugs which help to lower the pain and fatigue, and help her sleep improve. Susan also joins her local support group and finds out a great deal more about Fibromyalgia. Over the next twelve months she tries a whole host of tips, hints, dietary changes and supplements; and aids/appliances (some of which make no difference but some of which do help make small improvements). Susan is now in a ‘virtuous circle’. At one visit to her GP, Susan is told that gentle graded exercise could help her. She is at first sceptical because she knows how most activities usually cause her additional pain. She is also persuaded to lose the cigarettes altogether and to limit the alcohol she takes, especially at bed time. Susan starts a programme of walking to and from the shops and gradually extends this walk around her local park. Susan also joins a local yoga class and finds this to be an excellent way of stretching out her soft tissues (her muscles, tendons, joints etc.). This helps her considerably and she starts to do some of the stretching at home with a yoga DVD after 11.30a.m when she feels at her best. Susan’s virtuous circle is working well, her symptoms are much reduced and her quality of life is much better. Susan feels she can now just about cope with the demands of running her household and raising her children. Susan’s GP is delighted at Susan’s progress and now ask her the question “so when will you be able to return to work?” This is understandable as GPs usually help patients with ‘acute’ conditions to get progressively better and better to the point where a normal life can be resumed. A return to work seems to be both a logical and desirable ‘next step’ so far as her GP is concerned. His NHS contract even rewards him for helping patients get back to work.

Unfortunately, Susan’s Fibromyalgia is a life - long chronic condition. It will always be there and can very easily slip back into the negative clutches of a vicious circle if her particular regime is interrupted by a major lifestyle change such as taking up a new job.
This is the Fibromyalgia: Work Paradox.
Unfortunately this paradox is not acknowledged within the new ESA system (there is medical guidance on Fibromyalgia but it does not explore this important area in any way). Also, as our relationships with our own GPs are vitally important, there may be many GPs who need to be made aware of this situation (members of our support group have informed us of how they feel their GP has begun to lose empathy for their situation when they have tried to explain to them how they are deeply worried about the prospect of retuning to work).
For our own support group members and other Fibromyalgia sufferers who can identify with Susan’s story and who recognise that this situation applies to their own experience it might be helpful to copy this article and share it in order to point out this paradox to their own GP and, if applicable, to the benefit officials and doctors when making their claim for eligibility to the Employment and Support Allowance system of benefits, or to help with any subsequent appeals.

Peter
TALK BY HELEN BUCKINGHAM, DEPUTY CHIEF EXECUTIVE AND DIRECTOR OF COMMISSIONING & PERFORMANCE FOR NHS MEDWAY, AT THE MARCH MEETING
Helen began by explaining her role in NHS Medway, and introducing her colleague, Heleen, who has a more hands on role.
She said that NHS Medway plans and pays for all NHS healthcare for everyone who lives in Medway. They also provide a range of healthcare services directly.

They serve 280,000 people: those who live in the Medway Council area (which marks their boundary and has done since 2006), plus others just over the border who are registered with Medway GPs (doctors).

Their Budget for 2009/10 is £415million and they are responsible for using that money in the best possible way for the people of Medway.
Their job is to lead health services locally so that they, working with their partners in the NHS and outside it, and with local residents, bring about real improvements to people's health and healthcare.
Her purpose in coming to groups such as ours is to hear from us what our experiences are with the NHS.

Three questions are being asked of the people of Medway and these are:


What do you think of the NHS in Medway?

Do you get the care you need when you need it?

If not, what needs to change?

She particularly wanted to hear about the experiences that we have with the NHS regarding our condition of Fibromyalgia. Are the services that are being delivered for us at present what we need? They want to work more closely with people like us.


Helen explained that they have six key goals, and these are:


  1. Improving health and well-being. In other words to prevent people becoming ill in the first place. A campaign is being launched, together with Medway Council, to develop a Health & Wellbeing Strategy for Medway (Margaret & Ron attended the stakeholder consultation event that will develop this strategy, at the end of March).

  2. Supporting Future Generations. Medway is a young area in terms of the age of the population compared to the rest of the South East. There are high rates of smoking and obesity. With this in mind they are doing a lot of work with children and young people.

  3. Independence and Choice. They are looking at the best way to support those with disabilities and long-term conditions so that they can get the best out of life.
  4. Tackling Killer Diseases. The life expectancy in Medway is two years younger than in other areas of the South East.


  5. Care Closer to Home. A good service could be provided but if you are unable to get to it that is not good. They are working together with the Medway Maritime Hospital and Medway Council to try to provide as many services as possible within a reasonable distance from each person.

  6. Mental Health. One in four people will suffer with a mental health problem at one time or another in their lives.

As regards long-term conditions, NHS Medway have set up Strategic Change Groups to discuss how to change services for long-term conditions. There will be four different themed conditions, and Margaret and Ron were invited to join one of these groups.
Helen said that NHS Medway wanted to develop personalised care plans. They are starting to develop personal health budgets, and are piloting what it would look like if they used the system of direct payments.
Helen then took questions from the floor, including questions on the cost of paying for copies of medical papers if needed to support a claim, the gap in bereavement services, and services for those with Dementia.
Several suggestions were made to Helen, including, the possibility of having a self-referral service for those with Fibromyalgia to enable them to access information, the training of A & E staff in Fibromyalgia, and a free to phone number such as the Customer First service provided by Medway Council. Helen thought these ideas were very helpful. When members explained how some clinicians treated people with Fibromyalgia in a patronising manner, she said that even if it was ‘all in the head’ as has been said to some patients (not a view she shares) it is unacceptable to treat patients in that manner.

Ron told Helen that he and Margaret had been to give talks about Fibromyalgia to GPs in other areas of Kent, but that, although they had tried to access the same in Medway, the doors had been closed. He asked if we could have access to nurses in training and the ambulance services. Helen would be attending a meeting the following week where she would bring that up.

Peter mentioned that the national figures for those with Fibromyalgia are that at least 1% of the population has it. This could mean a potential figure of 3,000 people with the condition in Medway, given the figure for the population of Medway.
Helen asked that, as far as Fibromyalgia is concerned, how MHS Medway can improve patient outcomes and get value for money. The point was made that early diagnosis was the key and this could only be achieved through the training of GPs in Fibromyalgia.

It is hope that this will be the main point that Helen will take back with her.


The following were questions sent in prior to the meeting, for Helen to answer. She answered these on the day as follows:
Question 1:

Are there any plans to refurbish and reopen the hydrotherapy pool and to offer the facilities to people with Long Term Conditions.


Answer:

Helen is aware of the history of the pool. Unfortunately the pool was not installed correctly in the first place, and it is not now functional. A structural survey has been commissioned and they are looking into the need against the cost. They will be deciding whether it would be more cost-effective to re-open the pool or find different ways to provide this facility, and will do an options appraisal. It may mean that that will work with other partners in other areas. She will keep us informed.


Question 2:

Why does my Dr. always tell me that the pain I have had for years is depression and he has never taken me seriously. I have pains all over my body but he wants to deal with one pain at a time. He doesn’t listen to me. Shouldn’t there be more education for GPs about Fibromyalgia?

Answer:

Helen felt that there probably should be more education for GPs on Fibromyalgia. GPs meet every month but so far that have not agreed to include Fibromyalgia in their agenda. There is a re-evaluation of GPs’ skills and knowledge levels coming next year and there will be some challenges for some GPs in the country.

Question 3

What does the local NHS have in mind regarding Long-term treatment for patients with Fibromyalgia?



And

Question 4

Is there any thought being given to establishing a specific Fibromyalgia Unit dealing with all the varied symptoms of the condition?


Answer:

It is expected that there will be a long-term care plan for all those with long-term conditions. No specialised unit has been thought of but may be something that could be looked at in the future.


Question 5:

Will the Expert Patient Programme Courses, Staying Well, be reinstated soon?


Answer:

Helen had meeting during the next week to discuss this issue. They will be discussing the right way to provide this service and what would be needed in that programme. She agreed that there was definitely a need for this but it may be provided in a different way to the Expert Patient Programme model delivered before.


Questions 6:

In view of the apparent close link between Fibromyalgia and a under active thyroid - Would the Medway Hospital consider conducting a trial of the treatment recommendations of Dr Barry Durrant-Peatfield. If successful it would reduce the load on the Rheumatology Dept. and help countless thousands in North Kent. (the question was accompanied by background material)


Answer:

Helen said that there were currently no plans to do this and that the PCT don’t directly do trials such as this. She agreed to take it back to discuss with her colleagues in that area.

Our thanks go to Helen for an excellent talk and for openness in answering all the questions put to her. We look forward to working with her and her colleague, Heleen, in the future.

HEALTH & WELL-BEING STRATEGY FOR MEDWAY

On the 31st March Margaret and Ron participated in a joint NHS and Medway Council venture ‘Developing a Health and Wellbeing Strategy for Medway’. The meeting lasted three hours and was attended by about 50 people. We were welcomed by Dr. Alison Barnett, Director of Public Health, NHS Medway and Medway Council. The framework was explained by Karen Macarthur, Consultant in Public Health NHS Medway.
There were a number of workshops taking place which we participated in. It is a part of the drive by the NHS to move the focus from treating people with illnesses and diseases at GP surgeries and in hospitals to prevention of the illness/disease in the first place.
There was a lot of data displayed regarding the different council wards in Medway and the levels of poverty and illness. It was shown that there was a direct correlation between lower socio-economic status and life expectancy. For example Cuxton and Halling had the 2nd highest life expectancy whilst River Ward/Gillingham had the 2nd lowest life expectancy.
Some interesting facts were presented regarding (for example) Cardiovascular Risk Factors


  • Smoking: Medway was top with 31% of people smoking amongst 67 authorities in the South East

  • Obesity: At 25% Medway was the 6th Highest

  • Eating: Medway was 3rd lowest at Eating the 5 fruit/veg a day

  • Binge Drinking: Medway showed 16% on the scale which was average.

A survey in Medway showed that many residents would like to change different aspects of their lives. However they also identified obstacles or barriers that impeded their ability to change either their lifestyle or the way that they lived. For example;

Barriers to regular exercise:


  • 32% no time

  • 23% working

  • 20% will power/lazy

  • 16% nothing

  • 11%expense of Gym

  • 11% illness or pain

There were many issues and ideas discussed during the work shops to find ways of helping people realise their own potential and the way to taking steps to adjust their lifestyles before they became entrenched. Whilst much of this could be directed to younger people it was felt many people, no matter what their age, could benefit.


In the longer term it could lead to less people being sick and a diminishing pressure on acute care. It is, of course, also about saving money as acute care is the most expensive care available on the NHS. However, there is no doubt that the Healthier Lifestyles campaign could benefit people at all levels within society. The theme of the day was how do you encourage people to participate for the own wellbeing?
At the end of the day we felt that we had contributed an awful lot of information which the group were going to take away and build into the ‘Health and Wellbeing Strategy’.

CARERS' CREDITS

 

Carers' credit has been introduced from 6th April 2010. It is a National Insurance Credit which helps Carers' build up qualifying years for the basic State Pension and additional State Pension. To qualify for Carers' Credit you must care for one or more disabled people for a total of 20 hours or more per week. Each person you care for must receive:



 

Disability Living Allowance care component at the middle or highest rate;

or

Attendance Allowance at any rate;

or


Constant Attendance Allowance at any rate
Care Certificate

 

Where a person being cared for does not receive an appropriate qualifying benefit, Carers' Credit can still be awarded if you supply a Care Certificate. This will need to be signed by a health or social welfare professional.

 

If the person being cared for does not receive any of the above benefits the care certificate must be submitted signed by the Health and Social Care Professional (HDCP). A Care Certificate is supplied with each application pack.



 

The application pack contains:

The form

Detailed notes on who is eligible and what you need to do

A Care Certificate

If you have any questions about Carers' Credit, Contact the Carers' Allowance Unit telephone: 0845 608 4321
From Medway Carers' newsletter No. 24 April 2010

TALK TO MEDWAY OCCUPATIONAL THERAPISTS
We were very pleased to be asked to give a talk about Fibromyalgia to the Medway Occupational Therapists in April. This was held at the Gun Wharf Offices of Medway Council, and it followed on from the talk given to our Group in January by Angela Self who is an Occupational Therapist with Medway Council.
The talk we gave was well received and gave those attending an insight into the problems faced by those with Fibromyalgia. This will be of assistance to them when they visit clients with the condition, as it will enable them to understand the situation more clearly

Margaret & Ron

DO YOU NEED HELP WITH GARDENING OR DIY
We have a client who is profoundly deaf and whose first language is BSL.  He is interested in volunteering in the following areas:- driving (has full driving licence and own car), gardening, practical work & DIY & retail.  We have a BSL Communicator who would be able to accompany him to any interviews and also to any initial volunteering.

If you have an opportunity that may be suitable I would be grateful if you could let me know.

Julie Watt

Co-ordinator for Supported Volunteering

Hands Rochester Volunteering Bureau

01634 830371



INTERNATIONAL INTERNET STUDY SEEKING PARTICIPANTS
Participants are being sought to take part in a large-scale international internet questionnaire study about understanding and lack of understanding for rheumatic diseases, including Fibromyalgia.
Researchers at Universities in Utrecht (The Netherlands), Detroit (USA), Coïmbra (Portugal), Marburg (Germany), Ghent (Belgium), and Barcelona and Jaén (Spain) are collaborating on the study, which is funded by the Dutch Arthritis Association.
Patients with rheumatic diseases report that lack of understanding for their illness is an important issue in their lives. Researchers call this lack of understanding by others ‘invalidation’.
The aim of this study is to examine how much understanding and invalidation by others is experienced by people who have a rheumatic disease. The researchers also want to examine the consequences of this understanding or invalidation and compare this between different countries.


Patients with any rheumatic disease can fill out a questionnaire on the internet in their own language, which will take approximately 20 minutes. Participation will be voluntary and anonymous


If you want more information or want to participate, please go to:

www.lackofunderstanding.nl

A COUNTRY LANE

By Peggy Manser
Walking down a country lane

Eases my body of so much pain

The birds in the hedgerows all of green

A yellow rose like a queen

Soaring in a sky so blue

A lovely swallow passing through.

A butterfly in red and black and spots

With her white apron back

A blackbird with his lovely song

Makes my heart grow really strong

To face life’s daily grind and woe

To see God’s work where ere I go.

We must treasure along life’s way

All God gave us, so be praised

Don’t be sad, be of cheer

For at least we are here.


Peggy is also hoping to send us some diet sheets she has been given for IBS so we look forward to that.
She also asks if anyone else gets a burning feeling in the face and head, yet are outwardly cold. I can pass your details on to Peggy if you would like to communicate with her on any of this.
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.
FIBROMYALGIA AWARENESS AND DROP-IN DAY 8TH MAY
On 8th May we held an Awareness and Drop-in Day at The Thomas Aveling School, Rochester.
This year’s event, despite extremely inclement weather still attracted over 65 people.
It was good to see a large number of our present members, and it was great that all the publicity that had been done for this event paid dividends, in that it brought along a number of people who had Fibromyalgia but who had not previously heard of this support group.

It was also great to see a group that had been encouraged to come along by Sarah who runs the Kent On-Line Forum.


We were very pleased to welcome Cllr. Trevor Clarke of Rochester South and Horsted Ward, who was very complimentary about the event.

Thelma West, a Homeopath, spoke to people about how Homeopathy can help, Deborah from Living Well in Medway was able to help many people with advice and information, whilst many were helped with information from the Expert Patient representative. Also there was Pam Wright the Author of The Fibromyalgia Coach who is becoming a regular at our meetings, and Lesley and Jill the Pain Specialist Nurses were able to help a large number of people. As well as all this we

had our extensive Library of books and DVDs, seven tables of our own information, and books for sale to raise funds.

Tea, coffee, cold drinks, cakes and biscuits were all available free of charge and were enjoyed by those attending, and it was good to see so many sitting around the tables chatting to one another.


Thanks must go to Debs and Margaret our Librarians, Peter and Jay who looked after the refreshments, Sharon who helped raise funds by selling our books and DVDs, and Jean who, along with Ron and myself, greeted and spoke to all the people who attended the event.
We have to give special thanks to the Thomas Aveling School who were so helpful and especially to the Caretaker, his assistant, and the cleaner who set out the room according to our plan and cleared the room for us.

Margaret

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.

AWARENESS DAY VISIT BY KENT ON-LINE FORUM CO-ORDINATOR

(Editor’s Note: This was placed on the Kent Forum by Sarah and her husband and they have allowed me to copy this for our newsletter as it was written)
As you know, myself, Ian my hubby and a couple of members from the forum along with their family attended the Medway Fibromyalgia International Awareness day on 8th May in Rochester.

The weather on the day was very grim, heavy rain and fog and unfortunately I think this did keep a lot of people away.  I attended for over 2 hours, we only had the intention of popping along for around 40 minutes but in the end we stayed to the end and actually felt we ran out of time.  This in itself I think is a huge accolade to the event.  If it had been busier we would definitely not had enough time...  However, there did seem to be a steady trickle of people there and the information on offer was outstanding...

Now I research on a daily basis and even I found useful information, including that to apply for a motability car you know only need a minimum of 12 months DLA award left and Ian and I are due to change our car and will next weekend be going to have a look at a few.  

We met some absolutely fantastic people there both people visiting and the stands there were so helpful and knowledgeable.  I managed to speak to most but not all and Ron and Margaret were fantastic introducing me to people they felt I should talk to.


I met Pam Wright who is a life coach.  She has fibromyalgia herself and had to give up her teaching position but went onto qualify as a life coach to help others, in particular sufferers of invisible illnesses such as fibro.  She was very kind and gave me a copy of her book "The Fibromyalgia Coach" with permission to use some of the articles on here as long as I credit them to her.  (I will make a separate post on Pam with her contact details).
I also met Lesley Wright from the Sittingbourne ICATS team (Integrated Clinical Assessment and Treatment Service).  We talked for quite some time and I was impressed with her knowledge and caring personality.  She was very informative, telling me that they recognise that Fibro sufferers cannot swim in cold council run pools and that they are working to offer swimming in private heated pools.  This would be especially beneficial to those who have had hydrotherapy and want to keep it up but cannot stand the cold water in the local council pools.  Again I will post more details of this in another post but they are now not hospital based and she feels that they are able to provide a much better experience than those hospital based pain clinics.

Unfortunately we didn't get around to meeting the holistic therapist but I will try to obtain her details to post on here.

We were quite blown away to be honest as every time we turned around there was someone else waiting to meet me.  I managed to talk with a newly diagnosed lady and she expressed interest in joining the forum.  I also managed to chat with Julie Amos, from the Maidstone Support Group and she will be sending details of the speakers etc that they are going to have at their meetings throughout the year.


Of course myself and Ian also got to have a sit down with our members and families and have a cuppa and good old natter which was really lovely.


On top of all the other people we got to talk too... of course including Ron and Margaret who were fantastic as usual and ready to help or answer any questions, there was a lot of literature available free of charge, they had a wonderful library for members to borrow books and DVD's regarding Fibro and other relevant subjects.  There was a book sale to raise funds for the group and plentiful tea, coffee, cakes and biscuits all free of charge or donations were very much appreciated.


Ian came along to offer support but actually

came away having really enjoyed himself and actually learning a lot which really surprised him.  He would definitely attend another meeting like this.

We were so busy talking with everyone Margaret said we should have our own table next year so watch this space.


I was also given a lot of information on applying for grants to help aid the forum.  As you all know that donations are very much appreciated as the forum does cost a lot over the course of the year and I had paid the first 4/5 years out of my own pocket.  However it seems that we may very well be entitled to apply for funding grants to help us on our way.  I am looking into this at the moment and have today started the ball rolling by contacting grassroots.

Getting a grant would not only pay for our hosting fees but would enable us to move forwards.  As you all know we have become quite successful of late, with hospitals giving out our details and the articles for the magazine.  Funding would enable us to take this one step further and produce our own leaflets to help raise awareness and reach out to new members that need the support and friendship.  That is a very important part as I am sure you can all remember only two well how devastating it was to receive that diagnosis!!!

It would also mean that we would be able to have some merchandise for the forum, i.e. pens, car stickers etc which not only would help generate awareness, i.e. advertising but also help to start to generate revenue that would pay for the forum etc in the future...  It would also enable us to attend more local events to help raise awareness... So it could spell for exciting times.

So back to the day and I have to say, although it would have been nice to have seen a few more attend, all in all it was a fantastic day and so very, very worth while attended.  I



would highly recommend it to others in future!



Sarah
And from Sarah’s husband:
Hi to everyone I met at the Fibromyalgia awareness drop in at Rochester on Saturday the 8th of May 2010 it was a pleasure to meet you all.
As a non sufferer I was a bit sceptical about the day, however the information the care and the commitment and professionalism of the organisers blew me away.

Bravo Bravo to all involved............




Ian 
KENT FORUM DETAILS
Sarah runs the very successful Kent On-Line Forum. Details at:
http://www.fibromyalgia-kent-uk.co.uk/

REPORT FROM CONFERENCE & PAMPER WEEKEND 2010 AT BRACKLESHAM
There is a full report of the Conference & Pamper Weekend at Bracklesham, held in April, at:
http://fmsglobalnews.wordpress.com/2010/04/30/a-win-win-fibromyalgia-conference/
If you don’t have access to a computer, I can send you a copy. Please send an A5 stamped addressed envelope to 16 Barberry Avenue, Chatham, Kent ME5 9TE,
It sounds as though it was a very successful weekend with Professor Choy as the main speaker. If any of you did manage to go it would be interesting to hear from you for the next newsletter.










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