My name is Jeff Hopkins and I am the husband of Di Hopkins. I am 75 and some years older than Di. Since I had a stroke 3 years ago and various operations subsequently, I have slowed up physically and mentally. Di is my carer although I am also hers. We support each other. Our world is constrained within the limitations imposed by our ill health.
Di has shared her understanding and information about her long term conditions with me and she has an amazing network of sources that keep her up to date.
She knows about the NHS, local authorities and their workings. She knows what to do or whom to ask when information is needed. I share her interest in health and care.
Di has a long history of living with diabetes and a determination not to allow it to impede the way that she lives out her life. She has a remarkable measure of control over the effects of the illness. She manages the household and the life we share.
The impact of multiple sclerosis (MS) on the diabetes has meant that Di’s years of successful management of her diabetes have been disrupted. At times, when she goes hypo, she loses the power of movement in her legs. Mobility is becoming increasingly difficult. The move towards getting an insulin pump is complicated by her reaction to the change in insulins that have been required.
Di now needs assurance that I am on hand or accessible in case she falls or is unable to move. Di has, at times, been frightened for herself and afraid that I might have another stroke and she will not able to access help in time. There is a great deal of day to day uncertainty in our life and we cannot plan for activities with confidence.
More information on the experience of patients with similar long term conditions would allow for better personal management of changes that might occur.
It would be helpful if information sought about long term conditions, their interaction, resources, organisational operations and patient experiences could be accessed through a personal, informed guide/mentor. Di has, herself, been helpful to individual patients and staff.
I am fortunate that Di is so determined to understand what is happening and not to allow it to impede our life significantly and she has found that staff in the MS Society have been very helpful.
This is what I would like to see from the long term conditions strategy:
- That all patients and carers have access to a personal guide/mentor who will steer them through the experience of their long term conditions.
- That the strategy addresses not only the clinical condition but the cognitive, social and emotional fallout for patients, families, work colleagues and carers.
Read the blog by Di Hopkins, Jeff’s wife.