Neurological conditions the focus of patient care improvement

Increasing awareness of neurological conditions is at the centre of a new programme designed to improve the care of patients.

The Public Health Agency (PHA) and experts in the field within Health and Social Care (HSC) have developed the programme alongside service users and carers affected by neurological conditions. The training is for those who provide services to people impacted by the disorders to improve their knowledge and understanding of the complex issues.

Approximately 35,000 to 40,000 people live with a severe neurological disability in Northern Ireland. Conditions can include brain damage, multiple sclerosis (MS), Parkinson’s disease, Alzheimer’s disease, and epilepsy among many more.

Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement (PPI) with the PHA, said: “The idea behind the programme is to give service users and carers an opportunity to have their voice heard, to improve awareness of neurological conditions and improve the quality of lives of those who live with such conditions. We have a real commitment to providing a person-centred approach to care and that’s why we want to ensure that real-life knowledge and experiences influence how we do our business.

“The training programme shares stories from service users and carers, conveying the challenges that those living with or caring for someone with a neurological condition face, whether that is physical, social or economic.

“They range from a father who was worried if his daughter would be able to communicate to staff in a hospital ward, to a man who found difficulty buttoning his shirt when he developed  Parkinsons – things that many of us aren’t aware of, but which have an enormous impact on people’s lives.”

The training initiative will help service providers think differently about how they carry out their role when dealing with people with neurological conditions and how they can improve the services they provide be that health and social care services or other public services.

One contributor to the training video was Fiona McLaughlin from Belfast. She cared for her mother, who suffered from a neurodegenerative disease called Progressive Supranuclear Palsy (PSP). Fiona herself also has a neurological condition.

She said: “One of the issues for a lot of people with neurological conditions is that for many of us, it’s not obvious. Many people I’ve spoken to over the years have said ‘it’d be easier if I had a broken arm’. If you had that, it would be visible and something obviously wrong with you and people wouldn’t be expecting you to operate at full speed, to be quick on your feet or to think quickly. It’s not always physically apparent in the early or middle stages of a condition that someone has a neurological problem. I hope this type of recognition will be improved through the training, so that there is a greater empathy among those treating patients, helping not just them, but also their friends and families.”

Speaking at the launch of the training programme, Health Minister Jim Wells highlighted the role of service users and carers in the development of the initiative: “We meet people with neurological conditions every day and behind those people, you have their families, friends and neighbours who are living with the condition as well. I am delighted that this training programme has been developed with service users and carers affected by neurological conditions working in partnership with HSC colleagues.  This is an example of effective Personal and Public Involvement in practice.”

Dr Gavin McDonnell Consultant Neurologist with Belfast Health and Social Care Trust was also involved in the development of the programme.

Dr McDonnell said: “The neurological conditions awareness programme is a valuable resource for health and social care staff. It reminds staff of the range and depth of issues and challenges that those with a neurological condition and their carers face, not just the clinical aspects of their illness. It encourages us to work in partnership with patients and their carers to plan their treatment together and to help improve the quality of their lives.”