Hampshire and Islands Region

Help us to beat MS during MS Week 2010

MS Week 26 April – 2 May. We are beating MS.
The MS Society has a mission: to find a cure for MS and, until we do, to support people living with MS as much as we can.
MS Week offers you a chance to:

• declare your rights
• bake cakes and raise funds
• petition your MP

and much more!

Follow any one of the links above or go the special MS Week website and see how YOU can make a difference and make this MS week the most successful ever.

Living with Primary Progressive MS Conference, 26th June 2010, Southampton

Living with Primary Progressive MS is an information day for people with PPMS and their carers and family. For more details see Upcoming Events.

Support sought for new research into replacement (respite) care

Kings College London are undertaking a research project into how well replacement care (often referred to as respite care) is working for people with long term neurological conditions (LTNC) such as MS. The study aims to answer question such as

• To what extent are LTNC carers aware of the existence of replacement care services?
• Do LTNC carers have information about the services that are available to them?
• How accessible are these services and what barriers limit access to them?
• What factors influence use and non-use of replacement care?
• What are the essential components of good quality replacement care?

The study team are seeking carers to help with the study by completing a questionnaire. Further details regarding the study and contact information can be downloaded in Replacement Care Study Poster (287 kb) and Replacement Care Study Overview (49 kb) .

New format conference & AGM - book now, don't miss it

The Hant's & Islands Regional Conference & AGM has been brought forward from it's usual October date to the 20th April this year and the committee is launching a completely new format for the event.

• Firstly it will be held midweek in the evening rather than Saturday afternoon so that people who are working can attend without giving up precious weekend time
• Secondly the venue is the conference facility of a major town centre hotel rather than a cosy but obscure village hall
• Thirdly, for the conference we have commissioned two high profile speakers to address a topic of deep interest to all people with MS
• Fourthly a buffet will be provided so you won't need to skip or rush your dinner in order to attend

It's all laid on for you so don't miss out. For full details of the times, venue and format see Upcoming Events.

SPRING is HERE! Well at least the Spring/Summer edition of HILights

The latest edition of the regional magazine HILights is hot of the virtual presses. Those of you with computers will benefit from your technical savvy by being able to download a copy from the Newsletter page in advance of distribution of the printed version, but don't worry, you don't have to print it out. All members will still get their glossy one through the post as usual.

Bernie Simmons steps down as regional treasurer

Bernie Simmons retired as Treasurer of the Region at the end of 2009. The whole of the Regional Committee would like to express their thanks for the unstinting work that Bernie did for the Region in his role as Treasurer as well as for his excellent advice on matters that were not financial. Bernie has expertly handed on the accounts, in good condition, to Charlie, our new Treasurer. We wish Bernie lots of fun in all the spare time he will now have!

MS Society funded research on family members of people with MS

Researchers at the University of Southampton are carrying out research to understand how adolescents adjust to their parents’ MS. The work started off looking at the effects of MS on teenagers. The interviews showed that for some teenagers there were very positive things, while for others dealing with their parents’ MS was distressing. These interviews provided valuable insights which helped the team design a large nationally based questionnaire study of teenagers and their parents with MS. The study aims to identify psychosocial factors that are associated with good versus poor adjustment.

The team is looking for teenagers (13-18 years old) and their parent with MS to take part in the project.

The first part of the research involves completion of questionnaires related to MS and to psychosocial well-being. We will ask families to complete the same set of questionnaires at 2 times 6 months apart. The completion of the questionnaires will take approximately 30 minutes.
A £5 shopping voucher will be given as a “thank you” for your participation

If you are interested then contact Angeliki Bogosian on
02380 598721 or email Angeliki Bogosian.

Please note that by finding out more you are not committing yourself to take part.

Volunteering - what it means to you

Do you want to make a difference to somebody’s life? How about your own?

It has been proven that when you lend a helping hand to others, you also enjoy a better quality of life and a more positive mindset yourself. Being a volunteer is about giving a little of the time you can afford and lending your skills or your passions to something you believe in.

We have just started a new page here on the Hampshire & Islands regional website where you can see our current Volunteering Opportunities. Take a look, you never know, there might be something that suits you down to the ground.

Now we know - 100,000 people with MS - where it all started

It’s taken a long time and great perseverance from volunteers in the Hampshire & Islands (previously the Wiltshire Hampshire and Islands) region, complemented more recently by the efforts of members of the research team at the National Centre, but at last we now have a validated, revised figure for the number of people with MS across the UK.

It all started back in 2005 when the Lymington and District branch did a survey of their local GPs and found the prevalence in the area was 40% higher than would be expected from the national figure. This surprising result was taken up by the WH&I regional committee which decided to do a much larger survey covering 304 GP practices across the region. The results from this survey (see Research Links) became available in June 2006 and, though not quite as high as the figures for the New Forest, they gave a prevalence 31% above the expected number.

Having access to credible data on the number of people with MS in an area served by a particular PCT is of great benefit to SDOs when presenting the case for improved and extended services. It was with this in mind that Graham Hewitt and Michael Bray proposed the motion at last year’s national AGM that led to the research project recently completed by Dr Sara Thomas and Professor Andy Hall from the London School of Hygiene and Tropical Medicine (see MSS News).

The full breakdown of the estimated numbers of people with MS across the majority of PCTs in the UK will be available following publication of the researchers' paper later this year.

It has taken 4 years from the small beginnings in the New Forest but at last we can now state with certainty what many members have long suspected, the much quoted 85,000 was a gross underestimate and the real number of people with MS in the UK is likely to be in excess of 100,000.

MS Society funded research in Hampshire

A few years ago the MS Society did a survey of people with MS asking them what sort of research they felt the society should fund. One of the replies was to please fund more research into assisting people to deal with MS on a day-to-day basis. The MS society took this on board and amongst other projects is now funding an innovative stream of this research run by Professor Rona Moss-Morris and her team at The University of Southampton. For further details see MSS Southampton Projects (28 kb)

Trials results announced for new treatment for MS

The New England Journal of Medicine has published the results of a clinical trial investigating the benefits of a drug for people with multiple sclerosis called alemtuzumab (previously known as Campath-1H).

Lee Dunster, head of research at the MS Society, said: “The MS Society has been following this trial closely and we are delighted that it has reported such positive results."

“This is the first drug that has shown the potential to halt and even reverse the debilitating effects of MS and this news will rightly bring hope to people living with the condition day in, day out."

“More work is needed to prove the drug’s long-term effectiveness and we are very much looking forward to the results of the next stage of this important research, which is already underway.”

For more information, see the news and research pages of our website. Previous information on alemtuzumab can be found here.

Further scientific information about the trial results, including the full paper from the journal is available on request from the MS Society's press office.

Five years on, NHS still failing MS patients

A survey of services for people with multiple sclerosis (MS) by the Royal College of Physicians' Clinical Effectiveness and Evaluation Unit (CEEu) and the MS Trust shows that the NHS is still failing to implement the 2003 The National Institute for Health and Clinical Excellence (NICE) guidelines on the management of MS patients. For further details of this survey, see the MS Trust news article.