March, April and May 2005

Bank Now Open

The UK Stem Cell Bank, opened in the UK in May last year at the National Institute for Biological Standards and Control in Hertfordshire, is funded by the Medical Research Council and the Biotechnology and Biological Sciences Research Council. It will operate according to strict government principles and will act as a store for all types of stem cell lines, or unspecialised cells which have the potential to turn into different cell types, originally derived from embryonic, foetal and adult tissues.

The major aim of the Bank is to improve access to high quality cells for research. It will accept stem cell lines for storage, grow them then provide them to researchers.

Stem cell research offers enormous potential but a huge amount of work is still needed to understand how they work and to investigate possible ways in which they may be used in diseases such as MS. The UK Bank is largely seen as a crucial step forward in helping scientists understand the processes which can trigger stem cells to grow into different cell types. This may eventually offer a revolutionary way of replacing damaged and diseased tissue in people with a wide range of diseases.

The opening of the UK Bank highlights the gap between the UK and US laws on embryonic stem cells. In the US researchers may not use federal money for research involving human stem cells created after August 2001. This has caused controversy, both from the research community and Pro Life groups, although support is growing to expand funding for human stem cell research.

New Centre for Myelin Repair

The MS Society Board has agreed to fund a centre of research excellence at the University of Cambridge with the specific goal of developing treatments to repair myelin that has been damaged by MS.

The 5 year grant of £1.2 million to fund the first stage of this groundbreaking research project will bring together a world-class team of scientists with distinctive but complementary areas of expertise.

Over the next 5-10 years the team at Cambridge will seek to develop treatments that repair MS damaged myelin. Remyelination allows nerve fibres to function normally by repairing existing damage and it helps prevent nerve fibres from being lost.

Led by Dr. Robert Franklin, the Cambridge team’s plan has three phases:

  • Use newly developed experimental techniques to advance understanding of how remyelination works.
  • Testing those scientific ideas with the best potential in experimental models.
  • Scientists and clinicians working together to translate promising approaches into clinical treatments.

MS Awareness Week – 10th-17th April 2005

On Wednesday 13th April the Stuart Resource Centre will be holding an open day/exhibition between 10.45am – 6.30pm There will be a number of local exhibitors e.g. Horizons, the Continence Nurse, Homechoice, the Great Northern Partnership, etc. etc. This event is open to everyone.

We will also have 4 Complementary Therapists who will each give a talk/demonstration of their work, in the coffee room.

11-11.45am Marrianne Joyce Reflexology
1.30-2.15pm Shelia Harper Yoga and Acupuncture
2.15- 3pm Toussaint Angel Angel & Crystal Healing
3-3.45pm Karen Carvajal Indian Head Massage

Priority for sessions by the Complementary Therapists will be given to people with MS and their carers and bookings should be made by telephoning the Stuart Resource Centre on 01224 692777. If all the places are not taken up, we will be able to offer places to professional staff from the voluntary groups, the health service and the social work dept.
Do try to come along on the day.

Joint Future in Aberdeen City

Joint Future is Scottish Executive Policy, which is being implemented principally between the NHS and Local Authorities all over Scotland. For more than 10 years the Joint Community Care Plan has laid out, annually, how Health, Local Authority and the Voluntary sector have planned to work more closely. Joint Future takes this a step further, the primary focus being on Partnership working across all organisations and sectors so that no part of the system is working in isolation. The Aberdeen Partnership for Health and Social Care is the Committee which oversees the implementation of Joint Future and its’ members include Councillors, NHS non-Executive Directors, representatives of the Voluntary sector, service users and carers and management staff.

In April 2003 Aberdeen City Council and the NHS signed a Local Partnership Agreement which laid out how, from that time on, they intended to plan and deliver services for Older People and People with ill health, jointly. Although the requirement was that we first apply our efforts to older people, Aberdeen City also included all people with ill health in their redesign, since our nursing and social care services cover all Adults groups in their remit. This has resulted in major reconfiguration of all Health and Social Care Services in the Community and instead of separate Teams of Care Managers, Occupational Therapy Staff and Community Nurses, there are now 23 multidisciplinary Health and Social Care Teams grouped around GP Practices across the City. Many of the Teams are now collocated in Surgeries and Health Centres and the roll out process continues for the rest of the year.

The idea of integrated teams is that they will provide a “one-stop-shop” for service users who should no longer have to approach two separate agencies if they have both health and social care needs. Staff in the teams will be working together in a collaborative way, sharing premises, equipment, information and budgets to ensure that a seamless service is provided. Improved communication coming
about through all staff in the GP Practices having contact on a day to day basis and reduction in formalities between professionals should lead to faster provision of services, earlier identification of problems, greater awareness of the role of carers involved and the support they should have and a general improvement in the service people receive.

One of the requirements for implementing Joint Future has been the introduction of Single Shared Assessment (SSA) and this has been developed on a Grampianwide basis. The SSA aims to improve the quality of information and the ease with which it should pass between all the people involved with each client. This document aims to capture the basic information which would be commonly needed and recorded by all professionals in the course of carrying out their own assessment. The idea is that the first worker who identifies that the person being assessed is in need of services, whether these be health or social care, should complete the Single Shared Assessment and will then, with the service user’s permission share this with others who need to be involved. This should avoid people being subjected to repeated questioning for the same information by a range of professionals. The SSA is a short document which records personal details, the reason for involvement, services currently in place and a snapshot of ability and risk. There is a section which draws attention to the needs of carers and whether they should have a separate assessment of their own needs. SSA may be complete as a self-Assessment if service users prefer, and are able to state their own needs and to complete the form.

An Information Sharing Protocol has been developed by Legal services to support information sharing. This lays out, quite clearly, the responsibilities which staff have when sharing information under Data Protection and other legislation, and this has been agreed and signed by the NHS and the 3 Local Authorities.

Mental Health, Learning Disability and Substance Misuse services are well advanced in their planning to integrate in the near future.

Aberdeen Healthy Living Network

Aberdeen Healthy Living Network’s aim is to reduce health inequalities and improve health among people living in economic disadvantage in Aberdeen City. It brings together 30 organisations from the public, voluntary and community sectors who have an interest in this and is open to any agency or group who supports its aim. Its main source of funding is the Big Lottery Fund (previously NOF – Healthy Living Centres). Other funding comes from Aberdeen City Council and NHS Grampian.

The Network targets ‘life circumstances’ which impact on people’s health and we have three programme themes: Cash in Your Pocket, Life Skills Development and Parenting. Money has been allocated to various projects including a Volunteer Parent Mentoring Scheme, Travellers Outreach Work and Credit Union development.

A small amount of money exists within the Network to be allocated to organisations for ‘Group Work’ under both the Life Skills and Parenting themes. This funding can be applied for by organisations that are already involved in the Network or others who work with economically disadvantaged people and who share the Network’s aim.

The Big Lottery Fund funding is for five years and the Network has just completed its second year.

The “Cash in your Pocket” Project may be of particular interest to people with MS in that it aims to make money go further and maximise peoples income by helping them to access the range of benefits and resources that they are entitled to and introduce means to “make money go further“. Some of the agencies involved are Care and Repair, Citizens Advice Bureau, Debt Counselling, Pensions Service, Aberdeen Welfare Rights, Age Concern, SCARF (Save Cash & Reduce Fuel), Community Food Initiatives North East (Food Co-ops) and Grampian Support Forum for Credit Unions.

Further information on any aspect of the Network’s work or the Group Work funding can be provided by Diane Miller, Network Co-ordinator (Telephone – 01224 523832) or Fiona Smith, Network Administration Assistant (Telephone – 01224 523745)

The MS Working Group

The Grampian Wide Partnership gave their support to the working group for the work that had been completed and have asked for an interim/final report by June 2005.

The Grampian Wide Partnership are a group of people from Health and Social Work who plan new services in Grampian.

The work of the group is progressing well although there is a lot of work still to be done.
We will be holding a Consultation Workshop in the Autumn. This will be open to people with MS and carers and it is hoped that people in rural areas in Grampian will be able to attend.

New MS Information Base

The new “What is MS?” publication is now available. This comprehensive 28 page guide takes the place for three former publications on MS and provides the latest information on:

  • how MS is diagnosed
  • the various symptoms it may cause
  • current treatment and management options
  • suggestions for managing life with MS
  • sources of support.

All content has been updated following the
publication of NICE guideline for MS and the latest research findings. To date, feedback has been very positive e.g. “I like its straightforward no-nonsense style.” and “The design is great and makes it really easy to find the information you need.” If you’d like a copy give us a call on 692777 or pop in past and pick one up.

Happy Mondays Questionnaire

Last “Update” we enclosed a questionnaire asking you to let us know the subjects that might interest you if we were to set up a new Monday afternoon group. We have to confess we were a wee bit disappointed with the response but to those of you who got in touch with us a big “thankyou“.

Most people who responded seemed to be interested in either a “Computing for the Terrified” or “Digital Photography” course so we’ll be looking into the possibility of running these sometime in the near future. We’ll let you know what transpires. In the meantime, if anyone else has any ideas but didn’t manage to fill in and return the questionnaire please give us a call on 692777. We look forward to hearing from you.

Dial-A-Ride

Aberdeen City Council’s Dial A Ride service with a modern, comfortable, wheelchair accessible vehicle in now operating. If you are unable to catch a bus, have difficulty using local buses, can’t get from A to B without a car, have an important journey to make or there is no bus service suitable for you perhaps Dial a Ride is for you. The pre-bookable door to door service operates in Aberdeen to help people get out and about when they have no other means to do so. It can be used for Shopping Trips, Doctor or Dental Appointments, Special Outings, Educational Classes or just meeting friends.

The cost if £3.00 per return journey (£2.00 for Concession or TaxiCard holders) or £2 per single journey (£1 for Concession or TaxiCard holders).

Special advance bookings with an allowance of 2 guaranteed journeys can be made available to each passenger every year and should be made a minimum of 2 weeks before the travel date. Other journeys are allocated on a first come, first served basis within certain areas covered on certain days of the week and may be made up to 1 week in advance. The areas covered extend as far as Bridge of Don, Dyce, Kingswells, Peterculter and Cove.

For further information telephone Public Transport on 01224 523761 or e-mail cbodie@aberdeencity.gov.uk or to book a trip now just call 0845 60 11 600.

What Can I Claim?

MS can have big financial implications and it is worth checking to see whether there are any benefits you can claim. Even if you have looked into it before it is worth getting your entitlement checked regularly because the rules for existing benefits often change and new ones, such as Working Tax Credit, get introduced.
The main changes are usually introduced on 5th April each year, so mid April is a very good time to have an annual benefits check.

In addition, if the symptoms of your MS get worse it is worth arranging a benefits check, particularly if any deterioration looks like being long-term. The Healthy Living Network article on Page 3 mentions a number of local organisations that offer checks.

Young Persons MS Group

The Young Persons group has been running since November 2003 with varying degrees of success. At best it has attracted about 10 people for the evening, often there are only about 3 or 4!
As you can guess this is rather disappointing as we know there are a large number of people out there in the Aberdeen area that are “Young” and have MS.

Questionnaires were sent out to all people who attended at some point asking what we can do to get them to come back along, unfortunately very few were returned. As a result it was decided that we would change the day of the meeting to the second Thursday of the month.

We would like more people to come along so that we are able to organise other things to do, for example, going out for meals etc. Please do come, we don’t bite or anything like that. Everyone who has come along has been made welcome and it is nice to meet others who are affected by this condition in a positive and cheerful environment.

Everyone is welcome so please do come along and feel free to bring someone with you.

If you would like to ask any questions, you can either email (iain@ms-aberdeen.org.uk) or call me on 01224 313222 (after 6pm)

And Finally

We found this little poem so “uplifting” that we thought we’d share it with you and perhaps you could pass it on. The unknown author may never get the Nobel prize for Literature but could be in the running for the one for Medicine or even the Peace prize.

The Smiley Poem

Smiling is infectious
You catch it like the flu
When someone smiled at me today
I started smiling too

I walked around the corner
And someone saw me grin
When he smiled, I realised
I had passed it on to him

I thought about the smile
And then realised its worth
A single smile like mine
Could travel round the earth

So if you find a smile begin
Don’t leave it undetected
Start an epidemic quick
And get the world infected