My name is Di Hopkins. I am 58 years old, married with two daughters. I have 3 long term conditions: type 1 diabetes (diagnosed in1963), hyperthyroidism (diagnosed in 1978) and multiple sclerosis (MS) (diagnosed in 2005).
My experience of developing MS affirmed my view that there is a need to address the way that MS affects the life opportunities of the patient and how it impinges, directly or indirectly, on others within their family as well as their social and workplace networks.
Clinical staff, including consultants, GPs and nurses have little appreciation or understanding of the impact of the interaction between long term conditions when a patient has more than one. Medical services are very focussed and organised around the separate conditions.
A patient with a neurological condition does not necessarily present as disabled. When I developed MS, I had to continually explain that I had cognitive problems, balance problems and sometimes restricted vision. Also I found that I was regularly dropping things and I had a fear of being knocked over in crowds as I was not able to focus clearly.
It would have helped if I had access to a health professional who had researched my neurological condition and its impact on both my diabetes and my underactive thyroid problems. It should then have been possible to devise a care plan that took into account all my long term conditions.
I had to find out for myself about MS and the interaction between this and my 2 other long term conditions. I feel that it should be a part of a professional service to obtain relevant information and highlight what is appropriate for a patient to read; this should not be left to the patient to do this on their own.
The information and support that I have received as I’ve needed it from relevant charities and specialist nurses has helped make things better for myself as a person living with a long term condition. The impact of neurological conditions on daily life is less well known. For myself, I was able to ring the MS Society for advice on employment issues that arose and how to manage these. I also learned how important physiotherapy was at helping me to deal with my daily life.
A long term conditions strategy should require that all patients with a long term condition have a personalised care plan that covers all their long term conditions, if they have more than one; this plan would need to be monitored regularly by a clinician who is aware of all the long term conditions a patient has.
Patients should be given information that enables them to prepare for any possible deterioration in their condition(s). The strategy should provide information and support for both patients at home and those at work – and for their employers.
Due to cognitive and finger control problems, I discovered that it was necessary for me to get assistance when completing relevant forms – this impacted on my self esteem and I believe that a long term conditions strategy would need to note that depression can develop unexpectedly when patients have long term conditions and would need to be treated quickly.
Read the blog by Jeff Hopkins, Di’s husband.