The bid for an MS Nurse through the MS Society’s Nurse Fund scheme will not be going forward after all. Sadly the Primary Care Group (PCG), soon to be a Primary Care Trust (PCT), is unable to support the scheme.

It would appear that they would only consider a multi-disciplinary nurse who would also assist in the care of other neurological diseases such as Parkinson's and Motor Neurone Disease. This does not meet the criteria for the MS Society’s scheme, which will only grant funding for a pure MS Nurse. Therefore the funding offered from the Herts MS Therapy Centre and the Sylvia Adams Trust has had to be withdrawn.

As part of the package on offer under the MS Society’s Nurse Fund scheme, full training on MS would have been given to the nurse appointed and part of her role would have been educating nurses working in the community, and also GPs. So in fact we have not only lost the opportunity to have our own MS nurse, but also better educated community nurses and GPs!

The new PCT is working on a plan for a neurological nurse who will work with Dr Gibbs and sometime in the future this may well happen. However we shall continue to campaign for a dedicated MS nurse. The PCG/T has missed an opportunity to bid to appoint a nurse now through the MS society’s scheme and has lost out on £60,000 worth of funding over the next three years. Whose loss is greater?

Report from Eddy Roethenbaugh

Amongst more than 800 athletes running to raise money for MS will be Claire Welch a 26 year local primary school teacher. Although Claire entered the London Marathon in her own right she has offered to run to raise money for our branch, for which we are extremely grateful. When I spoke to Claire towards the end of March she told me how she was preparing for this grueling 26.2 mile run. She has a regular training regime and has recently completed a half marathon with the Fairland's Running Club. Claire said that she found it a tough challenge but managed to finish OK and was looking forward to London and the full marathon.

From the first steps of the day to those last triumphant strides toward the finish, a magnificent

Newly diagnosed ? Want to know more about MS? Then the This Is Your Life Conference could well interest you.

Learn about living with MS: A general information day on living with MS with a presentation by a neurologist and sessions on physiotherapy, caring, continence and cognitive problems.

The day also offers an opportunity to share information and experiences with other people affected by MS.

The conference costs £10.00 if you are not in paid employment and £20.00 if you are.

Motability services now include:

A video called Right First Time—helps identify problem areas such as storage capabilities and access difficulties.

A leaflet titled Choosing the most suitable vehicle for you—mailed out with every application.

A questionnaire—to help customers consider their mobility requirements.

A telephone Helpline offering advice on what to look out for when choosing a vehicle, details of Mobility Centres, local Motability accredited dealers and adaptation specialists

If all the members of your household are over 60 years old, or if the members of your household are disabled, and you own your property, then you may like to take advantage of the Gas Care Register. Along with most service providers, British Gas have a specialist department dedicated to ensuring that those people registered with the scheme that registered members receive a yearly safety check of their gas appliances and central heating system. The names of people on this register are passed to the contractors supplying the service so that whenever possible, if there is to be a power cut these people receive an advance warning. This also applies to electricity purchased through British Gas. Eastern Electricity also have a similar plan and I am reliably informed that most suppliers of domestic piped fuel have comparable schemes. To find out if you meet the criteria telephone your own gas or electicity supplier.

Do you have difficulty turning the pages of the telephone directory? Or perhaps the print is too small for you to read, If this is something that you experience then BT can help. On registering with BT you will be issued with a PIN number and by dialing 195 the operator will find the number you need at no charge

The Department of Health for England is consulting on a draft guidance for local authorities on non-residential home care charging.

The MS Society has joined forces with like minded organisations in the Coalition on Charging to provide a detailed response.

Regrettably, one outcome that this consultation will not produce is an approach as radical as that recently proposed for Scotland, where the Scottish Executive is looking at abolishing care charges paid by older people altogether.

Under the new proposals, councils in England will still retain the discretion not to charge for home care. For those that do charge, the guidance will set a framework for charging rather than lay down a scale of charges.

Some of the proposals represent a limited improvement, such as the view that flat rate charges are generally unacceptable, and that charges should not reduce service users’ income below basic level of income support.

Other aspects are less welcome. One example is the proposal that, when setting home care charges, the calculation of savings should be bought in line with that used at residential care charging

Although the guidance will have a big impact on many peoples’ lives, it is not subject to parliamentary scrutiny and has a relatively low political profile. Help us to raise this profile. Write to your MPs, telling them of your experience of home care charges and what difference you would like the guidance to make. If anyone was thinking or writing to their MP or the newspapers on this issue but thought that there was little point, now is the time to do it!

Having trouble reading books? Or maybe just holding and turning pages for any length of time is a problem! Try Listening Books. This organisation is a charity based in London and they have a wide selection of books which can be supplied on tape. Contact details are: 

Listening Books,
12 Lant Street
London SE1 1QH

Telephone 020 7407 9417

Email info@listening-books.org.uk

Website www.listening-books.org.uk

Don’t worry about the present foot and mouth crisis preventing you having a flutter, all these races are on film! There will be eight races with six horses in each race. Bets are dealt with on a tote system, and can be placed in multiples of fifty pence. IT’S EASY (and if we were dealing in Italian Lira your winnings could make you a millionaire!).

The entry fee for the night will be just £5, which will include a light supper.

The bar will be open from 6.30pm and the first race will be at 7.30pm.

I will provide more details of the event in the next newsletter (May), after which I will begin selling tickets. They will be sold on a strict first come first served basis and the committee and I very much look forward to your attending what promises to be a really super night.

All proceeds from this night will be for the benefit of the Therapy Centre, but if it proves popular and is a success, I will stage a further event on behalf of the Stevenage MS Society.

On the 1^st of March you may have noticed hidden away in the Parliamentary section of your paper that Alan Milburn announced that the government will be developing a new National Service Framework for long term health conditions.

The national standards will have a particular focus on the needs of people with neurological diseases or with brain or spine injury. In the long term this should be a good thing and may reduce the postcode differences and standards of services we currently see even within our own region. It is a particularly good thing that the Framework will have a focus on neurological conditions as hopefully this will mean that they will have a higher priority with health professionals. However, National Service Standards take a long while to be developed and it will probably be two years before we see things start to happen.

In the mean time we are still waiting for N.I.C.E. As you probably all know before Christmas N.I.C.E announced another almost year long delay before a decision will be released. This continues to leave people with MS who might benefit from the disease modifying drugs still in a state of confusion.