LONDON, December 11 /PRNewswire/ --
The MS Society has today (Wednesday) spoken out in support of a call for better care for people with multiple sclerosis (MS) following new research that suggests people with neurological conditions are left in an information void.
Results of the Taking Control survey, published jointly by the Neurological Alliance, the Association of the British Pharmaceutical Industry (ABPI) and Ask About Medicines, highlight how the UK healthcare system is failing people with MS by not ensuring access to appropriate information and specialist advice.
Jayne Spink, Director of Policy and Research at the MS Society, said: "Diagnosis of MS can be a frightening experience, which is why it is vital that people in this position have the information they need.
"It is wrong that people diagnosed with MS are left in the dark about their condition and this is why the MS Society makes information provision a priority."
According to the research, a majority (82%) of the 10million people with neurological conditions in the UK such as multiple sclerosis do not have as much information as they want about their condition.
On top of this, the survey found that four in ten (41%) are not treated with respect by healthcare professionals and less than half (44%) believe they are receiving inadequate care.
The MS Society is a member of the Neurological Alliance, which has today joined forces with the ABPI and Ask About Medicines to launch a campaign calling or people with neurological conditions to expect, as a minimum:
- To be treated by health professionals who attach priority to giving information to patients
- To leave the appointment at which they receive their diagnosis with an 'information prescription' including contact details of a relevant patient organisation
- To have a single, well informed and accessible point of contact for on-going information about their condition and treatment.
Dr Richard Tiner, from the ABPI, said: "The effective provision of information is vital for partnership between helathcare professionals and patients - with effects ranging fro the psychological benefits of accepting and understanding what is happening to them, to empowering people to actively share in their care.
"The demand for information from people with neurological conditions is high and it is critical that those affected are involved in the management of their condition."
Earlier this year, the MS Society swept the board at the Association of Medical Research Charities' (AMRC) 2007 Science Communication Awards, reinforcing our position as a leading provider of MS research information.
Notes to Editors:
- The MS Society (http://www.mssociety.org.uk) is the UK's largest charity dedicated to supporting everyone whose life is touched by MS, providing respite care, an award-winning freephone helpline (0808-800-8000), specialist MS nurses and funds around 40 vital MS research projects in the UK.
- Multiple sclerosis is the most common disabling neurological disorder affecting young adults and an estimated 85,000 people in the UK have MS.
- MS is the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system - which interferes with messages between the brain and the body. - For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern.
- Symptoms range from loss of sight and mobility, fatigue, depression and cognitive problems. There is no cure and few effective treatments.
- In addition to the 'Taking Control' survey a series of focus groups were held with 23 neurology patients and their carers to find more about their experiences in accessing and understanding information about their illness.
- A short video on the study featuring patient views can be viewed at the following link: http://www.youtube.com/watch?v=PfsLtsZQ53w.
- The Neurological Alliance (http://www.neural.org.uk) is the campaigning group of over 50 national and local third sector organisations fighting to improve services for people with a neurological condition.
- The Association of the British Pharmaceutical Industry (http://www.abpi.org.uk) is the trade association for more than seventy five companies in the UK that produce prescription medicines. As part of their role they have encouraged Datapharm to develop medicines information for patients which is available online at http://www.medicines.org.uk
- Ask About Medicines (http://www.askaboutmedicines.org) is the independent campaign to increase people's involvement in decisions about their use of medicines.
- The Long-term (Neurological) Conditions National Service Framework (NSF) was launched in March 2005 and aims to transform the way health and social care services support people to live with long-term neurological conditions. Unfortunately it came with no targets and no budget and so far implementation has been very slow. Key themes are independent living, care planned around the needs and choices of the individual, easier, timely access to services and joint working across all agencies and disciplines involved. This NSF should be a key tool for delivering the government's strategy to support people with long-term conditions outlined in the White Paper Our health, our care, our say and the NHS Improvement Plan: Putting People at the Heart of Public Services. It applies to health and social services working with local agencies involved in supporting people to live independently, such as providers of transport, housing, employment, education, benefits and pensions. For the 57 organisations that make up the Neurological Alliance achieving implementation of the NSF is a number one priority.
For media enquiries please contact the MS Society Press Office on +44(0)20-8438-0840, or the out of hours duty press officer on +44(0)7909-851401.