A LOVING husband from Leamington has been selected as one of three ‘Carer of the Year’ finalists in the 2017 MS Society Awards.
Mark Brightburn cares for his wife Portia who lives with multiple sclerosis (MS) and epilepsy.
The 42 year-old, who is an associate director at engineering company Amec Foster Wheeler, uses his spare time to coordinate a care team of over 50 people – including care assistants, speech therapists, MS nurses and neurologists – and provides 43 year-old Portia with personal care in the evenings and weekends.
Over 100,000 people in the UK suffer from the often painful and exhausting condition, which not only affects mobility but how patients see, think and feel.
And the Brightburns are just one of those whose lives are heavily affected by the devastating disease.
Portia said Mark had worked tirelessly to ensure she received the support she needed.
She added: “Living with MS requires both determination and endurance to be able to constantly adapt to the ebbs and flows of the condition. What Mark does to support me is like a second full time job. He gets me up every day, pulls together all the disparate parts of the care jigsaw and is always looking for ways that the professionals involved can work better together.
“Now that my MS is in the progressive stage, I feel increasingly isolated and completely dependent, but it’s comforting to have my husband Mark beside me. However I’m also concerned about his health and ability to cope with everything.”
When Portia also developed epilepsy, Mark worked closely with his HR department to develop a support network of 150 carers and has influenced government support schemes as well as working on the Warwickshire Carers Wellbeing Strategy.
Mark is passionate about the need for high quality local delivery of social care consistently across the UK, but says having to campaign for this improvement can be both frustrating and exhausting.
“Often it feels like we’re the first family to go through this. This clearly isn’t the case, but the learning and experience doesn’t seem to be captured to benefit the next person in line. It has been a little disheartening to see Portia’s support options reduce because her MS is now progressive.
“But together we go on because it’s also about making it less of a struggle for everyone by improving the delivery of co-ordinated support in a way that considers the needs of the whole family.
“The concept of an ‘award’ for this seems strange to me. What I have stepped up to do each day is just what needs to be done. Sadly, there is still lots to do and we all need to help to get through it. It is inspiring to bring such a diverse range of people together like this, people connected by MS, so that we can all learn from each other’s journey.”
The ceremony which celebrates the dedication of inspiring individuals in the MS community, takes place on May 5 in London.
Visit www.mssociety.org.uk for further details.
