Local people living with motor neurone disease (MND) in Swindon and the surrounding areas are receiving enhanced care thanks to a partnership by two local charities and the NHS.
Prospect Hospice has teamed up with the MND Association to provide a new MND co-ordinator in Swindon to better support people and their families living with the illness.
This new role will ensure those living with MND have access to a specialist clinical professional working with the wider community team to ensure care is well-coordinated and they are well-supported to the end of their life.
MND affects more than 5,000 adults in the UK at any one time and affects the nerves in the brain and spinal cord that help tell your muscles what to do.
For someone who has MND, the messages from these nerves gradually stop reaching the muscles which leads them to weaken, stiffen and waste, which can affect how you walk, talk, eat, drink and breathe.
MND is a life-shortening illness and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life and that’s why it’s essential people with the illness are supported by the right healthcare professionals to help them live well for as long as possible.
Jeremy Lune, chief executive at Prospect Hospice, said: “For some tie now, MND patients have lacked the care in this area that they deserve and we’ve worked with the MND Association to ensure we can provide a support service to these patients to ensure they live well and are cared by dedicated specialist professionals at the end of their life.
“The reality of this new service from Prospect Hospice is that those with MND and their carers will benefit from one point of specialist contact to oversee their care and care planning, helping to enable a smooth transition to hospice care if this is needed.”
To provide this role for local people, the hospice has worked in partnership with the MND Association and the NHS, and the three organisations will continue to work closely to support this essential work.
“MND is extremely complex and requires several healthcare professionals to support a person as the disease progresses. This new role means people can spend time living their life and making memories with their families, rather than feeling the burden of organising a huge number of appointments.
We’re incredibly grateful to be working with Prospect Hospice and the NHS and we are delighted to welcome Dorinda into the role,” said Chris Bennett, head of regional care partnerships at the MND Association.
Patient Dale Rose and Dorinda Moffatt
One of those who has already benefitted from the expert care in this area is Clare Rose whose husband Dale died recently after living with MND for five years. Clare said: “When Dale was first diagnosed, we had no one who understood or had good knowledge about MND. A lot of other health care professionals did not really understand the disease.
It is so reassuring to have someone to go to. Dorinda at the hospice is our first point of contact to go to for any problems. She brings everything together, answers any questions and we have confidence in her and her ongoing support.”
Dorinda Moffatt, the hospice’s dedicated MND and neurorespiratory specialist practitioner, will lead this new team and brings with her a wealth of respiratory practitioner experience to the role, having worked in this area of work for over 13 years.
Upon her appointment to the role, Dorinda said; “I am delighted to be taking on this role supporting people and their families living with MND. I am looking forward to the challenge of developing the service and working in partnership with my colleagues across the Swindon area.
My father died from MND so I understand on both a personal and professional level the importance of helping people live well with MND and I look forward to working with patients and their families so they can make every day count”.
cover photo: The Prospect Hospice and MND Association team celebrating the launch of this new support for local people
About Prospect Hospice
Prospect Hospice is a charity providing end-of-life care to people 24 hours a day, seven days a week, and has been rated ‘Outstanding’ by the Care Quality Commission. The hospice provides all its services free of charge to patients and this is made possible thanks to generous donations from the community it serves which raises 75% of the £7.5million it costs each year to operate.
Patient support in delivered in a variety of ways, tailored to the needs of the individual. Specialist teams provide clinical, emotional and practical support to patients and their families delivered at the hospice in Wroughton, Swindon, and in people’s homes.
Prospect Hospice was founded in 1980 and serves a community of more than 300,000 people in Swindon and north east Wiltshire, including Royal Wootton Bassett, Marlborough and Pewsey, plus Lechlade and Fairford in Gloucestershire.
About the MND Association
The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland. The MND Association is a Registered Charity: No 294354.
About motor neurone disease (MND):
- MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
- It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
- It can leave people locked in a failing body, unable to move, talk and eventually breathe.
- Over 80% of people with MND experience changes to their speech, which may become slurred or quieter. Some people lose their ability to speak entirely.
- It affects people from all communities.
- Around 50% of people with MND experience some form of cognitive change while living with the disease. This can affect their thinking or behaviour. This percentage rises to around 80% for people who are in the advanced stages of the disease.
- It kills a third of people within a year and more than half within two years of diagnosis.
- A person’s lifetime risk of developing MND is around 1 in 300.
- Six people per day are diagnosed with MND in the UK.
- It affects more than 5,000 adults in the UK at any one time.
- It kills six people per day in the UK, this is just under 2,200 per year.
- It has no cure.