Barbara Howe shares with you A short introduction Our Associations - PowerPoint PPT Presentation

Barbara Howe shares with you A short introduction Our Association’s recent achievements and 2013-16 plans and priorities

Improvement still needed The feedback from an MNDA survey has driven many of the association’s priorities in their many of the association’s priorities in their strategy – specifically:- ● Shortening time to diagnosis ● Increasing the number of people with MND referred to the Association referred to the Association ● Improvements to social care and better integration of health and social care ● More information to support end of life decisions

An important new aspect of our strategy ● In response to strong feedback through the consultation process we have added consultation process we have added Campaigning and Awareness Raising as the third mission area ● Alongside Care and Research

Our three mission areas ● We improve care and support for people with MND, their families and carers MND, their families and carers ● We fund and promote research that leads to new understanding and treatments, and brings us closer to a cure for MND ● We campaign and raise awareness so the We campaign and raise awareness so the needs of people with MND and everyone who needs of people with MND and everyone who cares for them are recognised and addressed by wider society (this includes both family members and informal carers as well as paid and professional staff).

Recent achievements in Care ● 19 Care Centres ● 8,000 MND Connect enquiries per year 8,000 MND Connect enquiries per year ● Approximately 320 Association Visitors supporting 1300 people ● Wheelchair and volunteer grants (£1million) ● Provided over 1000 pieces of equipment Provided over 1000 pieces of equipment ● Financial support £400,000 (422 people) ● Red Flag project with GPs

Our commitments in Care ● Development of the NICE . The NICE guideline is a very important tool in raising guideline is a very important tool in raising standards of care and will be developed for the NHS in England and Wales by 2016. ● More support for carers and children ● Be in touch with more people living with MND Be in touch with more people living with MND – we think we are in touch with more than 80% – we think we are in touch with more than 80% of people living with MND but this is an estimate. The National Clinical Register should help us better appreciate how many people are living with MND.

Current research areas ● Looking for the causes of MND – New genes, what the genes do and lifestyle factors what the genes do and lifestyle factors ● Developing bio-markers – early diagnosis and monitoring progress ● Healthcare research – supportive treatments, new questions new questions ● Communication – sharing research knowledge

Achievements: Research ● 50 Research projects (combined £8.2 million) ● 10 new projects – the quality of the projects 10 new projects – the quality of the projects coming through for funding is excellent with 6 research projects classified as Grade A ● 2/3 causes of inherited MND are now known ● Voice banking project started ● Voice banking project started ● Information sheet on inherited MND

Our commitments in Research Increase our investment in research ● Develop a population based clinical register. This is a new development which will ● mean that eventually we will have a register of all people in England, Wales and mean that eventually we will have a register of all people in England, Wales and Northern Ireland with the disease. Scotland has a register already. In the future it will be an important resource for research, but will take several years to develop. Increase the number of researchers we fund. If we fund researchers then we ● insure the brightest and best join and stay in MND research. More Care Centres doing research and more care based research. We do a lot of ● lab based research and now want to increase the amount of research into care issues – looking at those things that will help people living with the disease now issues – looking at those things that will help people living with the disease now and in the future to limit their symptoms and improve their quality of life. and in the future to limit their symptoms and improve their quality of life. Extend use of the DNA bank ● Invest further in genome sequencing – 1500 samples. We know that genes are ● important in MND and we want to invest in understanding genes better to bring us closer to the cause and eventually to a cure.

Achievements: Campaigning ● 16,000 Charter signatures ● I Am Breathing awareness campaign I Am Breathing awareness campaign ● Football vs MND ● Eric Rivers and Nick Knowles video ● Roundtable Charter event ● Working with partners: - Welfare benefits reforms - Free social care at end of life

Our commitments in Campaigning Build on the success of our 2013 awareness campaign I Am Breathing ● Achieve a measurable increase in the number of people who are aware of Achieve a measurable increase in the number of people who are aware of ● ● MND Support more local campaigning ● Use the MND Charter as a focus for the next election ● Red Flags project: reduce time to diagnosis. The red flags project with the ● Royal College of General Practitioners is work the Association has done to create an easy guide for GPs which identifies potential early signs of MND and encourages them to make an early referral to a neurologist. It is in the and encourages them to make an early referral to a neurologist. It is in the process of being launched. Continue to influence health & social care. As the NHS changes and local ● authority cuts bite we need to make sure that the needs of people living with MND are taken into account.

Staff and volunteers Our association values demand that we:- ● Continue to increase our understanding of the needs of Continue to increase our understanding of the needs of people with MND and their families through finding new ways to listen ● It is vital that Volunteers and staff work in partnership. Such an approach has been seen in the recent work to review the financial support guidelines where the working group contained a majority of branch and group volunteer members. contained a majority of branch and group volunteer members. ● Have strong partnership with our branches and groups ● Improved recruitment, training and support ● Better reflect the needs of people living with MND from diverse backgrounds

Income and Governance Ensuring we are a well managed organisation ● We need to increase our income and support year on year year on year ● Make sure it is clear when we are providing/funding support ● Measure the difference that we have made ● Welcome people from all cultures and ● Welcome people from all cultures and communities ● Tackle geographical inequalities

Your contribution ● Please read the strategy: let us know what you think of it think of it ● Give us your feedback – on the strategy and also on our services ● Give us any ideas that you may have ● As an Association we need to continue to work ● As an Association we need to continue to work together to deliver our plans and priorities. Our success is a result of the contribution of every one.