News - May 2008
Open Door - May 2008 page 3
- Choice of hospital expanded to cover all of England
- Carers' Week 2008
- Survey of MS services
- Uncertainty in making decisions about continence treatment
- MS Trust Chief Executive to retire
Choice of hospital expanded to cover all of England
From 1 April, people seeking non emergency treatment from the NHS in England have had the right to travel to any hospital in the country. This applies to both NHS hospitals and private hospitals that provide care at the same cost as the NHS.
With the right information, the new system means that people with MS have the ability to take a more active role in finding appropriate services. However, research by the King's Fund warns of the potential for worsening health inequalities based on the individuals' ability to find the information to make an informed choice.
The MS Trust's view is that people with MS should have access to specialist services when they need them, but choice can only be exercised sensibly if they have access to the right information. The regularly updated map of specialist MS centres that we published on our website in the autumn is a resource that can help people make that choice.
Carers' Week 2008
The theme of this year's Carers' Week, which runs from 9-15 June is 'Carers can't afford to be ill'. This will focus on the impact caring can have on a carer's health and wellbeing and the effect on people who rely on informal care from relatives or friends.
Carers' Week is an annual event organised by a coalition of ten charities including the Neurological Alliance, of which the MS Trust is a member. The aims of the week are to celebrate the contribution made by carers, campaign for better support and services and to highlight the help and support that is available.
Survey of MS services
Thank you to everyone who replied to the MS Trust/Royal College of Physicians survey. During January and February we received more than 1,600 replies. The survey looked at how MS services across England and Wales deliver against the 2003 NICE Guidelines. The parallel survey of Primary Care Trusts, hospitals, Strategic Health Authorities and Health Boards is also complete and the overall results will be available in June. We will include a full report in the next issue of Open Door and also on the MS Trust website.
Uncertainty in making decisions about continence treatment
Every day people with MS have to make choices between different treatments or different methods of management for continence problems. Sometimes not enough up to date information exists and there is uncertainty regarding the best choice to make. The James Lind Alliance has produced a questionnaire to identify areas where there is not enough information available. The results could then be used to encourage future research to address these questions.
MS Trust Chief Executive to retire
Chris Jones write: "I will be retiring on 31 July. As you can imagine, it's both sad and exciting! Exciting because after I retire I may rediscover 'life', but also because under Pam Macfarlane, our new Chief Executive, the Trust will go from strength to strength. Pam and I have worked together for the past four years and I could not be more confident in her ability to lead the MS Trust team and to continue our work to improve services for people affected by MS.
But it is sad too because it has been a privilege, that I will miss, to lead the MS Trust over the past 15 years.
So much has changed:
- more research into better ways to treat MS
- the first MS specialist nurses
- drugs to modify the course of the disease
- specialist MS centres in hospitals throughout the UK
- the (almost) death of "diagnose and adios"
- recognition of the value of physiotherapy...and more.
I am not arrogant enough to suggest that the Trust has been the cause of these changes, but we have certainly played our part. As a trustee, which I will become later this year, I'll be looking for even more change - no pressure there!
There is sadness too at leaving so many friends. The MS Trust is much more than its 25 staff in Letchworth. It is 25,000 supporters; it is 6,000 nurses, doctors, therapists in our health professional network; it is all the researchers we support. And what unites us all is that as long as MS is diagnosed, we will strive to make 'living with MS' as good as it possibly can be.
I wish all of you the best of health, the best of life.
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