A major, ongoing Public Health Agency (PHA) led consultation exercise has identified 12 recommendations to improve the lives of the 48,000 people, and their carers, who experience neurological conditions across Northern Ireland. These recommendations will form the basis of an action plan to improve service delivery and support for those experiencing a range of conditions, such as epilepsy, Huntington’s Disease, Parkinson’s Disease, progressive supranuclear palsy (PSP) and multiple sclerosis (MS).
The recommendations cover four areas:
- accurate information and diagnosis;
- control and choice, particularly self-management and person-centred services;
- day-to-day living and independence, including finance, employment, social life and ability to get out and about;
- emotional and psychological impact on individuals and families, eg the support available to deal with stress, fear, frustration, isolation, loss and vulnerability associated with living with a neurological condition.
The report was launched at a regional workshop, held in Cookstown (today) and co-ordinated through the Neurological Conditions Network, which was established to develop this work.
Speaking before the workshop, Health Minister Edwin Poots said: “Neurological conditions give rise to complex needs, which require support from a wide range of professionals. They also change lives, both for those directly affected and for their families and carers, and it is so important not to lose sight of this if we are to successfully address the challenges in tackling neurological conditions.
“Last week, I visited the home of Beth McCune, who suffers from motor neurone disease. I was invited to see for myself the daily challenges faced by Beth and her husband and carer, Arthur, and to hear of their experiences. While I was struck by their courage and patience, this visit underlined again for me the severe life-changing impact of the disease.
“At present, there are some 48,000 people in Northern Ireland living with neurological conditions. It was in recognition of the needs of men and women like Beth that my department requested the establishment of the Neurological Conditions Network and provided the necessary funding to support it.”
Michelle Tennyson, PHA Assistant Director and Chair of the Neurological Conditions Network, said: “This detailed engagement exercise was undertaken to get the views and quality of life experiences of those affected by these conditions. We tried to ensure everyone who wanted to contribute could, by providing support through helplines, the internet and face-to-face events. I am honoured that so many people have trusted us with their experiences to help us make a difference and was privileged to be invited into the home of Beth and Arthur McCune for the same reason.
“The recommendations cover a range of conditions and their implementation will need cooperation and action from professionals, service users, voluntary organizations and others, across many sectors and agencies. The network is looking forward to delivering on these challenging new ways of working to improve the lives of all those affected by neurological conditions.”
The workshop attracted service users and carers along with delegates from across Northern Ireland’s community, voluntary and statutory sectors.
If you have a neurological condition, or care for someone who does, and want to share your experiences, please go to: www.publichealth.hscni.net/ncnsurvey
You can also contact Julie Mawhinney, Tel: 028 9032 1313.
- This consultation exercise is ongoing at: www.speakoutforchange.net and aims to gain insight into the lives and experiences of those living with a range of neurological conditions, and their carers.
Pictured during a visit to the Belfast home of Mr and Mrs McCune, to share experiences of living with Motor Neuron Disease, are (L-R) Beth and Arthur McCune; Michelle Tennyson, PHA Assistant Director and Chair of the Neurological Conditions Network and Edwin Poots MLA, Minister for Health, Social Services and Public Safety. The visit was part of the Neurological Conditions Network consultation exercise, the recommendations of which were used to plan future service provision at a workshop in Cookstown, 19 October.
Notes to the editor
Contact the PHA Press Office on 028 9031 1611
- The Neurological Conditions Network workshop was held today, Wednesday 19 October, between 9.30am–1pm (lunch) at the Burnavon Arts and Cultural Centre, Burn Road, Cookstown, BT80 8DN.
- During this involvement exercise, 142 people shared their experiences in a two week period
- The Neurological Conditions Network is made up of representatives from: PHA, Health and Social Care Board, Patient and Client Council, Northern Ireland Neurological Charities Alliance, Long Term Conditions Alliance Northern Ireland, Carers Northern Ireland, Health and Social Care Trusts and the Department of Health, Social Services and Public Safety.