Editor’s WelcomeWelcome to the November 2004 newsletter. Hope you all had a good summer, not that we saw much sun. Sorry for the delay of this newsletter, but there were issues that needed to be resolved by the committee before going to press. This will be the last newsletter that I edit. It has been an enjoyable two years, but I no longer have the time and energy to devote to the newsletter and feel that it will be better to hand the job over to someone else. We would like to say a big Thank You to Jane Shaw, for all her hard work with the newsletter over the past 2 years. We are very sad that Jane has had to make the decision to resign, and wish her all the best. Keep in touch Jane. |
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We are sorry to inform you that sadly, due to declining health, David Johnson has had to step down as Chair of our group. Please could you respect David’s wish for space and peace to regain his health.
For future contact with the group please use the ENQUIRY LINE or the other contacts on the back of the calendar. All group services are continuing as normal.
Editor’s Note: Thank you to David for all your hard work for the group it has been much appreciated and we hope that your health improves soon. Take care of yourself.
The Enquiry line has now been in operation for a year. We have looked closely at the pattern of calls and have decided to change the times to reflect demand.
From JANUARY 2005, new times when your calls can be taken:
| Monday | 10am-12 noon |
| Wednesday | 3-4pm |
| Friday | 2-4pm |
Outside these times or when the phone is engaged with others calling you have the option to leave a message and we will try to ring you back as soon as possible. Please remember that the calls are taken by volunteer members of our group.
The Enquiry line is NOT a premium rate number and the group does not receive any money from calls. All calls should be charged at the normal rate for 0113 numbers - a local call for most members.
ENQUIRY LINE supported by Callagenix
The group meets on the 3rd Tuesday of each month from 1pm in the café area of the West Yorkshire playhouse.
A lift is available to the café area which has a wide range of food and drink. The Playhouse is opposite Leeds bus station; it has good parking and disabled spaces outside the entrance.
Future dates are:
Meetings are very informal and usually last for a couple of hours; look for the large sunflower to find us. Please come for as long or short a time as you wish, to meet fellow group members and to borrow books or tapes from our libraries.
Each month we have special 'greeters' at our meetings so don't feel you will have no-one to talk to. If you would like more information or just to make contact with someone before coming along, please contact the Enquiry Line.
Our regular monthly meetings take place on the 2nd Thursday of each month at the Friends Meeting House, Thornhill Street (off George St.) near Morrison’s in the Ridings Centre. The meeting house is open for us between 2 -4pm, please come for as long as you like for a chat and a cup of tea. Books are available for you to borrow. There is disabled access and parking for several cars next to the meeting house.
Future dates are:
If you would like more information please call the Enquiry Line.
Please remember not to wear perfume, aftershave or hairspray when you are attending a Group session. Some members suffer with chemical sensitivities and can become ill when exposed to even small amounts of perfume.
Our M.E. group is one of many community groups that belong to the West Yorkshire Playhouse Community Network. This is a scheme to enable financially and socially disadvantaged groups to go to the theatre. Members are able to see selected plays at a greatly reduced cost of £5. They can usually, though not always, bring a friend or carer for the same price. At least one person in a group of two must be an ME sufferer. The group aims to be friendly, so don’t worry if you come on your own.
New members of the Leeds and District ME Group are very welcome to join our mailing list and receive details of the next seasons’ plays as they become available. Please contact Kate for further details.
Anyone who did not attend plays this season, but wishes to remain on the mailing list must let Kate know, otherwise they will not receive any further theatre information.
Please remember not to use perfume, hair spray or aftershave when attending the theatre. By removing them from people in our party it will reduce any possible negative effects, as some members can be badly affected by these. Thank you for your support.
I have been lucky enough to have been in the scheme since its start eight or nine years ago. Despite having missed many performances I’ve been booked for I must have seen over a hundred productions. Missing performances hasn’t put me off booking for the next season. The standard of all aspects of the productions are very high.
The sets have always grabbed my attention. Whether they’ve been a basically bare stage or extremely complicated they always seem right for the play. The lighting and music are always impressive but most impressive of all have been the cast. I have seen several productions where not only has the acting been top class but the same people have been playing musical instruments and singing or dancing. But not necessarily all at the same time!
The last season saw a good mix of productions from serious drama to comedy and music. The season started with an impressively staged reminder of the chaos and brutality of war. This was George Orwell’s experiences of the Spanish Civil War. It was followed by Christopher Ecclestone in a comedy drama. The season finished with an unusual and enjoyable spoof-horror musical. But the general choice of highlight of the season was Alan Plater’s stunning Blonde Bombshells. There were many hilarious moments, a serious sub-plot and the cast also formed an excellent swing band.
The Community Network Scheme has improved the quality of my life. Long may it continue!
For more information please contact the Enquiry Line.
I have suffered from M.E for the past 14 years. I am writing this article to share some valuable advice with fellow M.E sufferers who have to attend a medical examination as part of their Incapacity Benefit claim. The following account is of course my personal experience of that process, and in no way representative of the vast majority of people who have medical examinations.
I recently attended a second medical examination for Incapacity Benefit. My initial medical examination two years ago went smoothly and I was awarded Incapacity Benefit with no problems. However when I got the appointment through for a further medical examination I still armed myself with as much information as I could. I read the advice booklet provided by one of the national M.E groups, and also the enclosed information sheet provided by the Medical Services on behalf of the Department for Work and Pensions. When I arrived for my medical examination, although naturally apprehensive, I thought I had a pretty good idea of the process and what to expect.
My experience this time was unfortunately far from a pleasant or positive one. As I felt it hadn’t gone very well, on my return home I phoned an M.E benefits advice line. I wanted some advice on how to go about making a formal complaint, not just about the process, but also against the doctor who carried out the examination. The benefits advice person asked details about my interview and medical examination then offered the advice below.
The doctor carrying out the medical examination does not read the personal capability assessment form that the patient completes and supplies prior to the examination. That information is the patient’s own personal account of their illness, and how it affects their daily life and ability to work. The doctor is not there to read the information provided by the patients; they are there to make their own judgments based on the actual interview and medical examination. Irrespective of the questions the doctor might ask, it is up to the patient to relay the information they have put on their Personal Capability Assessment form to the doctor carrying out the medical examination.
In my case, I wrongly assumed the doctor had read all the information I had provided on the form. Therefore, when she didn’t ask me any specific questions relating to my illness and how it affects my ability to walk, sit and stand, I assumed she didn’t need to know. I took my lead from the doctor and only answered the questions I was asked.
Would I approach a medical examination differently in the future? Yes, I would take a much more pro-active role. Even if I wasn’t given the opportunity I would ensure the doctor was aware of all the information I had supplied on the personal capability assessment form.
If you’ve been turned down for benefits and need help lodging an appeal, one charity that offers free representation is the Tribunal Representation and Appeal Centre, based in Portsmouth.
Its advisers can be contacted at or . Former DLA appeals officer Janice Rowtledge handles many of their cases from claimants with M.E. Her top tip for a successful appeal is to keep a detailed symptom diary to aid decision makers in assessing your average day.
Any member who is in receipt of Incapacity Benefit (or Income Support under the same conditions as Incapacity Benefit) should be getting National Insurance credits. This means that, even though you are unable to work, you will have National Insurance contributions which count towards your state pension entitlement.
However, you would be well advised to check that you are actually getting these NI credits. You should be, but that doesn’t mean you are. If your record is incomplete, it could mean you are not entitled to a state pension, or that you are asked to pay to make up the difference.
You can ask for a Pensions Forecast now, by phoning or writing to:
Inland Revenue
NICs Office
Benton Park View
Newcastle upon Tyne
NE98 1ZZ
This should detail your qualifying years, so you can check it and let them know if they've got it wrong.
Out of four people I know who asked for one of these forecasts, each found that there were missing contributions which should have been paid. It’s easier to sort these things out sooner rather than later, and it could make quite a difference to you in the future.
Last year the Government allocated £8.5M of funds for the expansion of CFS/ME services in England. The Leeds CFS/ME Service, based at Seacroft Hospital, successfully bid for funds to develop the service in West Yorkshire. As part of the bidding process, patients, who had received help from the Service, were invited to contribute their views to the bidding process in an open forum meeting.
Directly following that meeting, a meeting of the Leeds CFS Service Steering Group, which was organising the bid, took place. David Johnson and I stayed on to attend this meeting and now form part of the Steering Group, which meets quarterly.
Following the success of the bid, the Leeds CFS/ME Service is now involved in the planning, development and implementation of the expanded service. This is a complex process involving the development and implementation of an operational model of the service, and formulation of communication plans, training and research strategies. The development of job descriptions, recruiting of new staff and finding adequate accommodation for the expanded service are all in hand. There is also to be a clinical document setting out the approach of the Service to CFS/ME.
A ‘User Forum’ has been set up for users and their carers to have input into the development of the new service. These take place every two months on ‘J’ Ward at Seacroft Hospital.
By the time this article appears in the newsletter three forums will have already taken place. Early forums concentrated on developing a positive, cooperative and constructive format for the meetings. The forums are not a suitable venue for airing personal grievances. As part of each meeting, the CFS/ME Service gives feedback on recent developments in the expansion of the service. Informal minutes are taken to inform all service users of each meetings outcome
The minutes, including dates and times of future meetings, will be made available at LDMEG social meetings at The Playhouse and in Wakefield, and displayed on the CFS/ME Service notice board at Seacroft Hospital.
Attendees have already become involved in helping define the role in the service of a recently recruited nurse (Debbie Pullen). The role of CBT in treating CFS/ME is to be discussed in a special meeting with the Service’s CBT therapist, Suzanne Moore, on Friday 21st January 2005 at 1.30 pm on ‘J’ ward.
If you want to have a say in shaping the new service please come along.
Due the recent resignations of our Chair and our Newsletter Editor, we are looking for volunteers! If you are interested in volunteering for either of these posts, or know of anyone else who may be please contact *The Secretary, 20 Farm Gardens, Snydale, Pontefract, WF7 6DF. Alternatively if you would like to help with the group in any other way please make enquiries to the secretary.
Do you have muscular or arthritic-type problems with your hands? I’ve found some black techno-gloves, which retain heat better than normal gloves to ease movement and pain. They also give bandage-like support and help with grip. Your fingertips are uncovered which enables tasks to be performed with the on (like typing, untying and paperwork). Other body-parts are catered for with (sometimes) the same techo-material: thermoskin with trioxon.
Try Clarks Independence Centre’s brochure for details: 71 New Road Side, Horsforth .
I was pleased to come across a popular doctor’s phone-in programme on radio 2 where the doctor was clued-up and sympathetic to M.E. She used the phrase “bone-aching tiredness unlike normal”; “information sensitivity, such as by being in the front of a car (passenger)”; and “the yo-yo of M.E.: doing too much when you think you can then paying later”. I thought I’d pass this on to the newsletter readers, as it’s encouraging for the public’s perception of M.E. (being a popular programme) and the medical profession’s behaviour.
Sick of your hot water bottle or wheat bag slipping off, or having to keep refilling / reheating it? Need something more portable? Not near a radiator or socket to plug in a heat-pad? I’ve found some superb help for my chilly-spots, pain and stiffness when out of the house: stick on self-heating pads! The size of a hand, they create their own brilliant heat for several hours. They stay stuck on and are repositionable. The cheapest version I’ve found is by Lillets (sold as tummy pain relief!) or try other brands on Boots therapy shelves.
These two items were sent in by a member, who thought they might of some use to some of our members.
Ricability is a charity that publishes on products and services to enable older and disabled people to live more independently.
"Staying in touch" is its new guide to telephony for consumers. The guide includes: useful phones (fixed and mobile) features and accessories if your hearing or sight is poor. www.ricability.org.uk
Leeds Alternative Travel is a registered friendly society which recruits volunteers who use their own cars to provide transport for elderly or disabled people. For more information about booking or providing transport 0113 395 1003 or 0113 395 1004
As well as giving visitors the opportunity to comment on information and articles on the site and on current benefits issues, this bulletin board is intended to be a resource in connection with disability living allowance claims.
One of our main purposes is to encourage people who may be eligible for disability living allowance to consider making a claim. If you do decide to make a claim we also hope to make it easier for you to do so in two ways:
This doesn't mean that we try to help people 'cheat' in some way. What we are doing is recognising that completing the claim pack in a way that ensures the decision maker gets to see all the relevant information is really difficult and, if you've never completed a pack before, it makes very good sense to check things out with people who have.
You may sometimes help clients fill out a DLA claim pack in connection with a condition you know little about. It may be difficult to know what questions you should be asking your client, or there may be questions you would like to ask, but first you want to be sure that they are relevant, such as whether the condition can sometimes cause incontinence. You can ask any questions you need to in the condition forums here without worrying that you are going to cause embarrassment or give offence and know that you will be answered by real experts: people who have that condition.
The name grew from the isolation this DD can cause to some of us, leaving us stranded, as if alone on an island, and from one of our main symptoms, the Brainfog; but the Island theme, has grown to naming different areas and has also already sparked lots of playing, well, with palm trees on our banner, we are paddling and playing Frisbees; and I hope everyone is generally having a good time.
It has just been set up by a group of seven people, male, female, ill and fit, to offer a place for the over 18’s to go for support and fun. The idea is to have a truly democratic community, where we have the freedom to talk about most things, well, apart from the usual copyright and no porn issue type things, almost anything going, all we ask is that people remember other people’s feelings. The site, we hope will grow in the way it’s membership want, with the seven people who set it up, only occasionally having to do more than join in and have fun along with everyone else.
The deadline for submissions for March’s newsletter is January 15th 2005. Please send your contributions or suggestions to the Secretary
The views expressed in this newsletter are for information only and should not be used in place of advice from appropriately qualified and experience professionals. The views given may not be those of the Leeds & District M.E. Group, the President, the Editor, or the Executive Committee. We try to make sure all information is accurate and up to date but we cannot take responsibility for items included in this newsletter or guarantee their accuracy. Any use you make of this information is your own responsibility
The Leeds & District M.E. Group does not recommend any particular treatments or services. Before trying any new therapy you should discuss it with your doctor. A therapy which helps some people might not help you, and could possibly make you worse. These comments also apply to information which is given at our meetings and via our enquiry lines, etc.
