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

June 2011 ISSUE 53

Next Meeting: Thursday 28th July, 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 28th July – Zara Cuccu & Amy White, Dieticians from Medway Maritime Hospital

Thursday 22nd September – Wanda Wright - Homeopath

Thursday 24th November

All at the above address and time.

MAY MEETING

The May meeting was very lively and Sue Harrison from Jobcentre Plus gave an excellent presentation on Benefits. She also brought along helpful booklets on Benefits that will be available at meetings.

Sue has promised details of her presentation and this will be given in the next newsletter.

FIBROMYALGIA AWARENESS DROP-IN DAY ON MAY 7TH

The Fibromyalgia Awareness Day on Saturday 7th May was a huge success. All exhibitors were kept busy for the whole event and around 150 attended.

For a full report and pictures see pages 7 and 8 of this newsletter.

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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 2011, was £3491.11.

Expenditure since then has been, £102.50 for DVDs, £394.52 for 024, £2.19 for Sundries, £7.83 for postage, £39 for Library, £75.55 for Special Events, and £295.74 for Photocopying.

This leaves a total of £2573.78.

At the May meeting and during the past two months, we raised, £32 on the raffle, £1.30 for books, £41 for pens, £27.90 for refreshments, £403.50 in donations, £266 for sale of 024 Fibromyalgia, £7 for plugmates, £4 for CDs, £94 for DVDs, £7 for Notepads, and £3 for Car Stickers.

This gives a total of £866.70 to be deposited in our bank account.

This gives us total of funds of £3460.48.

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

SALES OF THE CONFERENCE DVD

The sales of the DVD of the talks by Professor Choy (Recent Advances in the Treatment of Fibromyalgia) and Margaret Robson (Fibromyalgia - The Patient’s Perspective), at the Conference for Drs and Healthcare Professional in October, at the Ashford International Hotel, have gone much better than anticipated. The first 100 were sold within a couple of weeks, and another 50 were ordered. These also sold out, so we ordered another 50. We have had a lot of positive feedback on this. Should you wish to purchase a copy, please send your name and address, together with a cheque for £4 (includes £1 postage), to the address on the front of this newsletter. Cheques should be made payable to Fibromyalgia Support Group (Medway)

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

This CD has been very popular with members. It has been recorded by Neil Berry who is an NHS Consultant Clinical Psychologist with Hampshire Community Health Care in Southampton/Hythe. He works full-time with people who live with chronic pain.

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@

TALK BY DR NICK READ ON IBS (IRRITABLE BOWEL SYNDROME) AT THE MARCH MEETING

Dr Nick Read, MA, MD, FRCP is Acting Chair and Adviser of The Gut Trust. He works in private practice as a gastroenterologist and psychotherapist, helping people cope with illnesses, like IBS, that have no clear cause or pathology. During a long academic career, he has held university chairs in Gastrointestinal Physiology, Human Nutrition and Integrated Medicine, published lots of papers and a few books on gut function, eating behaviour, mind body connections and unexplained gastrointestinal disease, including, of course, IBS. He now devotes much of his time trying to encourage people to understand and manage the situations and emotional reactions that underpin their illnesses. This is the subject of his latest book, 'Sick and Tired; healing the illnesses, doctors cannot cure' (Phoenix, 2006). He has been associated with The Gut Trust since its inception as The IBS Network.

The Gut Trust (soon to renamed the IBS Network) is the national charity for people with Irritable Bowel Syndrome in the United Kingdom. They support people who are coping day to day with IBS; a condition that is misunderstood, often stigmatised and which can chronically affect your everyday life. They support people with Irritable Bowel Syndrome in several ways. For their members, they offer a telephone helpline staffed by medical and nursing specialists and on-line medical advice and consultation, fact sheets on all aspects of IBS, online support, can't wait cards and travel cards to facilitate access to toilets at home and abroad, a quarterly magazine, and an interactive and frequently updated website that includes their unique fully comprehensive Self Management Programme to help you live life to the full with IBS.

Nick gave us an overview of IBS which included:

• IBS can only be diagnosed by a qualified medical professional - please do not attempt to self diagnose - see your GP if you think you might have it.

• There is no cure for IBS, but it will not develop into anything else, and does not mean that you are more likely to get another illness.

• Treatment for IBS is based on your symptoms - there is no magic pill, but treatments for each individual symptom can be very effective.

• Self management is the best way of improving the symptoms of your IBS. Understanding how your lifestyle and diet can make your symptoms better or worse can be of real benefit. The Gut Trust has a unique self-management programme for IBS on the members area of its website (membership is required to access).

• You can help by cutting down the amount of insoluble fibre in your diet (insoluble fibre is bran and the like), and by avoiding spicy foods. If you have diarrhoea, you might want to cut down on the amount of fruit and vegetables you eat, and avoid artificial sweeteners. If you have constipation, increasing the amount of water you drink is often helpful.

He mentioned complementary therapies and said that they can be very beneficial, but to check the Gut Trust’s advice first. He said that Probiotics can be helpful in managing your symptoms. The important factor is the type of probiotic and the amount of active ingredient it contains. If you taking a specific probiotic and it is not helpful within a month, you may want to try a different one.

Nick said that understanding your illness helps you have an informed discussion with your GP and make good choices in your own life. Most importantly, you are not alone. Support and understanding from organisations such as the Gut Trust and its network of self-help groups makes a real difference in understanding and living with your symptoms, overcoming anxiety and building your self-confidence. Becoming a member of the charity helps you reduce your sense of isolation, seek help and assistance when necessary, and supports others who are in the same position as you are.

He then went on to tell us what IBS is. Irritable Bowel Syndrome or IBS is the name doctors have given to a collection of otherwise unexplained symptoms relating to a disturbance of the large bowel. It affects around a third of the population at some point in their lives and about one in ten people suffer symptoms severe enough to seek help from their GP. It can be a painful and distressing condition and should only be diagnosed by a qualified medical professional.

The symptoms of Irritable Bowel Syndrome may include:

• Abdominal pain and spasms, often relieved by going to the toilet.

• Diarrhoea, Constipation or an alternation between the two.

• Bloating or swelling of the abdomen.

• Rumbling noises and excessive passage of wind.

• Urgency (An urgent need to visit the toilet).

• Incontinence (If a toilet is not nearby).

• Sharp pain felt low down inside the rectum.

• Sensation of incomplete bowel movement.

When X-rays, blood tests, endoscopies and other diagnostic tests are carried out, the results do not reveal any obvious abnormality. For that reason IBS is often called 'a functional disorder' of the bowel; in other words, an illness associated with a disturbance of bowel function without any change in structure or obvious cause.

Symptoms frequently occur in other parts of the body. These may include; headaches, dizziness, backache, passing urine frequently, tiredness, muscle and joint pains, ringing in the ears, indigestion, belching, nausea, shortness of breath, anxiety and depression. A similar range of symptoms are reported by patients with other medically unexplained illnesses, such as Chronic Functional Dyspepsia, raising questions as to whether they are different expressions of the same type of illness.

IBS is often associated with an increased intestinal sensitivity and irritability, making people intolerant of foods and bowel contents. Stress is often a significant instigator. Despite more research and public awareness of IBS, no cure has been found. Medical treatment may vary from advice on diet and relaxation to the use of anti-spasmodic drugs and low dose antidepressants. Some find help from counsellors, psychotherapists and practitioners of complementary medicine - such as acupuncturists or homeopaths. Others prefer to manage their own condition with information and assistance from organisations such as The Gut Trust.

As many people with IBS feel isolated and on their own, one of the most effective ways of coping with IBS on a day-to-day basis is being able to talk about it with others or read about their experiences and what has helped them.

The quick answer to who gets IBS is, 'we all do', though some people get it more severely than others. Our bowels are not always as regular as clockwork and bloating and abdominal pain are very common complaints. At any one time between 10% and 20% of people living in western countries fulfil the diagnostic criteria for IBS. In common with other medically unexplained illnesses, IBS is more frequently diagnosed in women compared with men, in young compared with old and in western countries compared with the developing world. It is commonly associated with emotional tension, is frequently triggered by life changes, difficult life situations or stressful life events.

The Gut Trust run a telephone helpline to provide information, advice and support to anyone living with IBS. Staffed by specialist nurses, the helpline is open between 19:30 and 21:30 UK time on Tuesdays and Thursdays.

The helpline is specifically aimed at people who have irritable bowel syndrome. They can provide:

• support and advice

• general information about the condition

• specific information about medications, treatments and investigations

• advice on dietary and lifestyle changes; and

• advice on self management and self help

Nick has developed a Self-Management Plan for the Gut Trust. It is the only comprehensive interactive programme for the management of Irritable Bowel Syndrome available in the UK. It consists of eleven modules that have been adapted for individual study and is supported by a range of fact sheets which means the programme can also be used as a resource for Self Help Groups. Navigating around The Self Management Programme couldn't be easier, they've laid it out as modules that are divided into units. Each module deals with a specific subject about Irritable Bowel Syndrome and each unit explains the module in more depth. Accompanying the modules is their growing series of fact sheets which give more information ranging from the symptoms of Irritable Bowel Syndrome to how to care for children with IBS. If there are any terms you don't understand in either the Self Management Programme or the fact sheets, they've also provided a glossary to explain them in more detail. This can be accessed at

The Gut Trust’s website is:



Nick gave an excellent talk which was informative, yet humorous. He dealt with the subject sympathetically which was appreciated by all who attended the meeting. A number of members said that they wished he could have had two hours instead of one, in which to talk and answer questions, but time was limited both for us and him on this occasion. He has since emailed and said that he would be happy to come again at a later date as he had very much enjoyed speaking at the meeting and was very complementary about the interest of members in his talk.

Nick mentioned that he has been asked to write the Pathways to Management of IBS for the GP Commissioners.

We look forward to seeing and hearing from Nick again at a later date.

CHANGE AT THE TOP

(A newsletter from Helen Buckingham)

You will be aware that primary care trusts are combining in local clusters, to build resilience in the system during the current period of change within the NHS, and to ensure continued focus on quality, financial stability and outcomes for patients. The deadline for all PCTs to have a single Executive Team and Board is June 2011.

Ann Sutton has been appointed as Chief Executive of the Kent and Medway Cluster of PCTs and Colin Tomson has been appointed as Chairman of the Cluster Board.

Interviews for the Cluster Executive posts concluded on 31 March and the following appointments have been announced:

• Sarah Andrews, Director Nursing and Quality

• Hazel Carpenter, Director of Commissioning Development and Workforce

• Daryl Robertson, Director of Performance and Assurance. Daryl will have a local focus for West Kent.

I (Helen) have been appointed Director of Whole System Commissioning, and Deputy Chief Executive for the Cluster, with a local focus for Medway.

Arrangements have yet to be finalised for the roles of Director of Finance and Estates, and Director of Communications and Citizen Engagement. Further information on these will follow.

Clustering PCTs will support and create space for emerging GP commissioning consortia and accelerate joint arrangements with local authorities, mirroring the new system as quickly as possible.

In Medway, GPs have voted to form a single Medway-wide consortium. This decision strongly reflects the feedback they received from stakeholders across Medway and will enable the new consortium to build on the strong partnerships and structures that already exist, ensuring high quality and effective patient care. The consortium expects to have a constitution by May and will be continuing its good working relationship with NHS Medway in the new cluster arrangements.

Changes to the NHS continue with the separation of the providing and commissioning of community health care. Since 1st April, Medway Community Healthcare and NHS Medway have become separate organisations. Medway Community Healthcare, which provides 38 different community health services to people in Medway, such as health visiting, and district nursing, has been given the go-ahead to become a social enterprise.

In the rest of Kent community services have come under one organisation, Kent Community Health Trust. We are delighted that Marion Dinwoodie, former Chief Executive at NHS Medway, has been appointed as Chief Executive of this new organisation. We wish both new organisations well.

Managing change is challenging but necessary if we are going to provide better health outcomes for Medway residents while managing the pressure of increasing demand.

Everyone working in the health service and across our partnerships is determined that we will succeed in achieving this. It was no surprise to me that the national NHS Staff Survey results showed that NHS Medway staff are in the top 20 per cent of PCT staff nationally for feeling satisfied with the quality of work and patient care they are able to deliver and are more likely to agree that their role makes a difference to patients.

Helen Buckingham

Director of Whole System Commissioning and Deputy Chief Executive

Kent and Medway PCT Cluster

BLOOD-TAKING SERVICES IN ROCHESTER AND STROOD

New services

Two new clinics offering blood-taking services in Rochester and Strood are now up and running and are open to anyone in Medway. A drop-in clinic for patients is available five mornings a week at Rochester Healthy Living Centre. Doors open at 8.00am for an 8.15am start on Monday, Tuesday, Thursday and Friday, with the last ticket at 11.30am. On Wednesday, doors open at 10.00am for a 10.15am start, with the last ticket at 1.30pm. At the APEX Medical Centre in Gun Lane, Strood, this service is available three afternoons a week, on Tuesdays, Wednesdays and Fridays, from 1.30pm - 4.30pm. Patients should call 01634 720722 to book an appointment.

The new clinics, run by GP practices, replace four mornings a week blood-taking sessions run by Medway NHS Foundation Trust, at Rochester Healthy Living Centre and at Keystone Centre, Gun Lane, Strood, which ceased on 31 March 2011. The start of these clinics brings to 32 the number of places in Medway where any local resident can go for a blood test. A further 11 GP surgeries and branch surgeries take blood samples from their own registered patients.

Full details of the locations and opening times of blood-taking clinics in Medway are available at:

medwaypct.nhs.uk/bloodtest

How does this affect you? Contact the LINk to let them know.

LINk Contact:

Name: Neville Dack

Telephone: 01303 297050 / 07814 427245

Email: neville@kmn-ltd.co.uk

From Medway LINk Bulletin Issue 33 April 2011

DARENT VALLEY AND MEDWAY MARITIME HOSPITALS TO MERGE?

Information

A range of collaborative working between Medway NHS Foundation Trust and Dartford and Gravesham NHS Trust around both clinical and non-clinical services has been taking place between over the past year.

The proposed changes to the NHS in the Health and Social Care Bill, as well as the increasing financial pressures, mean that they will both be faced with some significant challenges over the coming years and a plan is now being considered that means the trusts, that run Darent Valley and Medway Maritime hospitals, could be joined together. It is anticipated that feasibility work will be complete within a timeframe that would allow approval processes to be complete by April 2012.

The trusts have said that the process will be open to scrutiny and that they will consult with staff, patients, the public, governors, members, GPs, commissioners and local authorities. Any decision will be subject to approval from the Department of Health and Monitor, the foundation trust regulator.

Kent and Medway LINks have been in contact with the trusts to find out their plans for public involvement in the process and will keep you up to date with developments, meanwhile let them

know what you think.

LINk Contact:

Name: Neville Dack

Telephone: 01303 297050 / 07814 427245

Email: neville@kmn-ltd.co.uk

For more information from the trust contact:

Name: Yasmin Khan, Head of Communications, Medway NHS Foundation Trust, Medway Maritime Hospital, Windmill Road, Gillingham, ME7 5NY

Telephone: 01634 833852

From Medway LINk Bulletin Issue 33 April 2011

BUT YOU LOOK GOOD! A GUIDE TO UNDERSTANDING AND ENCOURAGING PEOPLE LIVING WITH CHRONIC ILLNESS AND PAIN

This 56 Page Booklet gets to the heart of why our friends and family members have difficulty with continuing illness and pain. It helps them to understand that even though a person with a chronic condition may LOOK good, it does not mean they FEEL good! Moreover, it gives them simple, pragmatic ways to truly be an encouragement. What to say, What not to say and How to help.

BUT THEY LOOK SO GOOD. THE PARADOX OF LOOKING GOOD, BUT FEELING BAD

This 3 fold pamphlet is an excerpt of the booklet, But You LOOK Good! It is a great way to help friends and family better understand chronic illness and pain that can be debilitating. Both of these publications can be ordered from:



FIBROMYALGIA AWARENESS AND DROP-IN DAY 7TH MAY 2011

On 7th May we held an Awareness and Drop-in Day at The Thomas Aveling School, Rochester.

This year the event attracted over 150 people, and 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 lot of people who had Fibromyalgia but who had not previously heard of this support group. This is always a surprise to us as our group is over 300 strong and we have been in existence for nine years and our publicity is in all the Drs surgeries, clinics and healthcare centres. As well as this, we put regular press releases out.

Wanda Wright, a Homeopath, spoke to people about how Homeopathy can help, and Pam Wright the Author of The Fibromyalgia Coach, who is becoming a regular at these events, helped a large number of attendees to learn how to cope with the condition. Lesley, Jill and Sonja, the Pain Specialist Nurses, were able to help a large number of people. In fact they barely had a minute to themselves during the whole event. Caroline from Medway Mobility was on hand to guide people to the right aids that would suit their situation. Caroline is the very helpful Manager of the shop in Chatham High Street. She has Fibromyalgia herself so is ideally placed to help. Jo Brown and her colleague, from Medway Council’s Benefits Unit, found that they had an extremely busy time with the many requests for help and advice on what benefits people could access. Last, but not least, the Medway Carers’ Centre came along with all the details of their information for Carers, their Young Carers’ Project and their Ethnic Minority Carers’ Project. They also manage the Living Well in Medway project.

All exhibitors were busy throughout the day and all said what a worthwhile event it was.

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. We sold a large number of the DVDs of Professor Choy’s and my own talk at the Conference for Drs and Healthcare Professionals last October (we have already sold 200 of these). This goes down really well as it is a useful tool to show people exactly what a Fibro is going through. We also sold our own pens, plugmates, car stickers and notepads.

The 024 Fibromyalgia that we bring in from America goes like hotcakes and but we now have received yet another delivery.

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 our Librarian and Alison who helped Debs and spoke to many people, Brenda, David and Judith 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.

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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.

Our thanks also go to UKFibromyalgia for the £150 for photocopying of the very popular articles on Fibromyalgia and the associated symptoms.

Margaret Robson

IGNORE IT AND IT GOES AWAY!!!

I was recently in a situation where someone who had Fibromyalgia came breezing into the room to collect something. When she overheard us talking about the condition her response was “Oh, I just ignore it and carry on. Around 3 o’ clock I feel tired and I get pain, but if I keep busy it just goes away”. Luckily, she breezed back out again before waiting for a reply from either of us Fibros. I’m sure I could actually feel the angry vibes coming from the person I was speaking to. Well, lucky her, was one of the milder comments we could have made. The less mild doesn’t bear saying!

So why do these sort of comments make us cross? Well, I think we feel it makes light of what, to us, is a very real, painful and debilitating condition. I can accept that maybe there are some people who do not suffer so badly with the condition, but it does rather give, for want of another word, non-Fibros, the wrong idea of what it is like to have Fibromyalgia. It’s hard enough having a condition that is so painful, so exhausting and with so many other symptoms, and on top of that, looking really well, so that people don’t really believe there is anything wrong with you, without having someone infer that if you just keep going it will go away. If only!!

I’m tempted in my darker moments to wonder if these people do, in fact, have the same condition as me. Very uncharitable, I guess. I wonder, are there different degrees of Fibromyalgia, and can you really ‘get rid’ of the pain by ignoring it? I don’t believe so. I do believe in distraction therapy, in that by doing something to keep your mind away from the symptoms you can forget them – but only temporarily (great whilst it lasts). There’s always catch-up in my experience. I do try my best to lead a ‘normal’ life, whatever that is, but then I run out of steam, my legs suddenly feel too weak to hold me, or my knees give way. My eyes want to close – although sleep is but a dream, if you’ll excuse the pun. My back feels as though I’ve single-handedly pulled a barrel-load of bricks along, or my arms and hands decide they don’t belong to me and either drop everything I pick up, or stop me picking the items up in the first place.

I don’t give up – it’s not in my nature, but it does feel, when people make these sort of comments, that they are saying, if you ignore it like I do it will go away, you’re not trying hard enough. Sympathy is not something I want or crave, and I don’t feel sorry for myself. This is my life and I have to get on with it and live it the best way I can. I guess it’s difficult when you can’t see what is wrong, but maybe if people didn’t have expectations of me, I wouldn’t have to struggle to live up to them – and cause myself more problems in the process. I can – and do – quite a lot, but it needs to be in my time, at my pace.

Maybe it’s me that puts the pressure on myself by trying to be what others expect. Perhaps next time I hear someone say they just ignore the symptoms of Fibromyalgia and it goes away, I’ll just smile sweetly and say, “I’m so pleased for you”. Now, how many pigs can I count in the sky!!

Margaret

FUNDRAISING ITEMS FOR SALE

Don’t forget that we have the following items for sale:

Car Window Stickers at £1 each;

Plugmates at 50p each;

Pens at £1 each;

024 Fibromyalgia normally £12 each but special offer this month £9 each,

Notepads at £1 each

Please send a cheque for the required amount payable to Fibromyalgia Support Group (Medway) to 16 Barberry Avenue, Chatham, Kent ME5 9TE.

STROOD FIBROMYALGIA MEETING

Dr. Sabri from the St.Mary's Medical Centre in Strood will be hosting Expert Patient Group meetings on Fibromyalgia at his Surgery in Vicarage Road.

The meetings will be held quarterly and the first meeting will be held on Wednesday 27th July from 1pm to 2pm. Dr, Sabri has stated that eventually he will be able to invite along experts on the subject.

This group will be mainly for people who have Fibromyalgia and who live in Strood, but people from other areas will be very welcome. Please contact Dr Sabri for further details as the group is independent of the Fibromyalgia Support Group (Medway).

MAKING THE NHS BETTER

We all know that, whenever possible, moving care closer to people’s homes makes sense. It makes sense for patients, who get a more convenient service, often at a community clinic or GP practice, which can usually see them faster and at an earlier stage of their illness, enabling speedier recovery.

It makes sense for healthcare professionals, enabling staff in the community to make use of their full expertise, and hospital specialists to focus on the most complex cases. And of course it makes sense for the NHS by making best use of resources, allowing savings to be reinvested in other aspects of healthcare.

As we, in the Kent and Medway PCT Cluster, focus increasingly on delivering a slimmer, more effective NHS, I am delighted to be able to report that further initiatives to offer care closer to home have been launched in Medway:

• A new minor oral surgery service for patients needing complex tooth-extraction and other treatments

• Improved, faster and more convenient treatment for people with a deep vein thrombosis (a blood-clot)

• Assessment of patients in Medway by paramedic practitioners (highly skilled ambulance staff) who can treat some patients and make sure that others access the right care

• A new service for people with lymphoedema (tissue swelling) which offers care to more people and is based in Medway for the first time.

In addition, commissioning teams are reviewing eating disorder services and aim to improve local provision for seriously ill patients who cannot currently be treated in Kent and Medway. These are just a few examples of how we can improve patient experience and outcomes while also cutting costs - a real win-win.

As the Medway Commissioning Consortium takes over responsibility for the planning and delivery of the Operational Plan, we look forward to many more improvements of this kind.

Helen Buckingham

Director of Whole System Commissioning and Deputy Chief Executive

Kent and Medway PCT Cluster

PROGRESS ON GP COMMISSIONING IN MEDWAY

Medway Commissioning Consortium is making good progress and will shortly agree its constitution and formally elect the executive board members who will represent Medway’s GPs. The consortium will operate within NHS Medway to plan, commission and deliver healthcare between now and April 2013 when it will take over complete responsibility.

During May, NHS Medway and Medway Commissioning Consortium will set up a Commissioning Committee which will be responsible for the delivery of the Operational Plan in Medway and will replace the Professional Advisory Committee.

Natalie Davies has been seconded into the role of Chief Operating Officer for the Medway Commissioning Consortium. Natalie will be working with the consortium for the next six months to support its development, establish governance structures

and gain GP Commissioning Consortia (GPCC) pipeline accreditation.

Medway is one of three emerging GPCC in the region taking part in the pipeline, a pilot to assess the readiness of consortia for formal accreditation by the NHS Commissioning Board. This will be rolled out to all emerging GPCC from the end of this year.

The development tool covers leadership, vision and values; commissioning processes; people and operations; relationships, collaboration and engagement; financial stewardship; managing change and governance.

The other emerging GPCC taking part in the pipeline project are Surrey Heath and North West Sussex Association.

Contact: natalie.davies@medwaypct.nhs.uk

PLAN FOR HEALTH AND HEALTHCARE IN MEDWAY, 2011/12

NHS Medway’s Operational Plan for 2011/12 is now available.

It sets out the priorities and detailed plans for improving health and healthcare in Medway during the year, with a particular focus (reflecting the health needs of people living in Medway) on health improvement, long-term conditions including cancer, diabetes, cardiovascular disease and respiratory conditions, mental health, urgent care, dementia and end of life services.

The measures of success for 2011/12 include:

• an increase in life expectancy for people in Medway

• at least 80 per cent of people with a long term condition managing their own condition through personal care planning

• at least 1,350 fewer people admitted to hospital in an emergency every year (a reduction of 6.6 per cent)

• at least 4,000 fewer excess bed days for people having unplanned care

• the whole system working together to improve life expectancy for people with an enduring mental illness

• 66 per cent reduction in the use of antipsychotic drugs

Contact: evelyn.white@medwaypct.nhs.uk

HAVE YOU USED THE NEW BLOOD TAKING SERVICES IN MEDWAY RECENTLY?

NHS Medway wants to hear your views about the reviewed blood taking services.

The new service, which has been running since March, has significantly increased the number of clinics across Medway and the opening times. The number of clinics that anyone can use has increased from 9 to 30 and the availability of the service has increased from 115 hours to 381 hours per week, an additional 266 hours across Medway each week.

To have your say, complete our questionnaire to tell us what you think, and help us to continue to develop the service.

Contact: tracy.bishop@medwaypct.nhs.uk

DLA CUTS WHO WILL LOSE OUT?

An update from Benefits and Work benefitsandwork.co.uk

The DWP have now published much more detail about how they intend to assess people for personal independence payment (PIP), the replacement for disability living allowance (DLA) for working age claimants. And it’s already clear who some of the people most likely to face DLA cuts are.

Current claimants aren’t actually due to be forced off DLA and assessed for PIP until 2013, but the DWP is in a hurry to get the regulations in place and let Atos start creating new software and preparing for the mass migration. So they have now published a list of the activities and descriptors that will be

used to decide who gets an award of PIP and at what rates.

PIP awards will be based on the number of points you score for the different daily living and mobility activities. The assessment procedure is very similar to the one used for employment and support allowance. Unfortunately this will include filling out a questionnaire and then, for most claimants, having to attend a medical at an Atos examination centre where a doctor or nurse will use a computer programme to assess you.

We don’t yet know the scores for descriptors - except for details of which activities will be high, medium or low scoring - but then neither does the DWP. First they have to try out the new system on ‘volunteers’ who already get DLA, so they can fiddle with the scores until they can be sure that their target of a 20% reduction in payments is going to be achieved.

But we do know enough to be able to say which current DLA claimants are most likely to lose out under PIP, simply from knowing which activities will and won’t be taken into account. For example, it’s clear that claims where problems moving around indoors are a major factor will be less likely to succeed under PIP. The same looks to be true of claims that rely heavily on night-time care needs, claims where supervision is the main issue and many others.

It’s important to make it clear that these are only draft assessment criteria. But given that the DWP have already started testing them and intend to have the whole system worked out and published by October, it seems unlikely that they will be keen to make any dramatic changes. Benefits and Work members can find out more details of who is most likely to lose out on transfer to PIP and download our 17 page guide to the draft assessment procedure.

Also on the subject of changes to benefits,

we’ve updated our (Benefits and work members) members page on recent and forthcoming benefits reforms.’

No doubt in preparation for the huge number of appeals that the enforced transfer of DLA claimants is likely to produce, the tribunals service will be recruiting disability wing members for DLA tribunals in November. Anyone who is disabled or who has knowledge of disability through their work can apply. You need to be available for a minimum number of sessions a year and you get paid a reasonable amount per session – I don’t know how much it is now but I believe it used to be over £100 a session. You can register to be sent an email when the recruitment process begins at:

.

Editor’s Note: This information is from the Benefits and Work Newsletter.

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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NEWSLETTER

COFFEE & INFORMATION MORNING

(Funded through Cllr Andy Stamp’s Ward Improvement Fund from Medway Council)

Come along and join us for a cup of tea or coffee. Bring along your family or friends who are interested in finding out more about Fibromyalgia. We will be available to answer questions and supply information about Fibromyalgia. On Friday 8th July 2011 from 10.15am to 11.45am at The Parochial Hall, Ingram Road, (between Portland Road and Grange Road), Gillingham ME7 1YL

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