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What a life changing event taught me about health and social care

Andrew Johnston

At the age of 36, my life changed. Up to that point, I had a promising career in the Army. I had graduated from the Army Staff College and spent 2 years on the Plans and Programme staff in the Ministry of Defence, becoming familiar with the way Whitehall works. I had been made an MBE; promotion to senior ranks was a distinct possibility. But, whilst commanding a company assigned to the United Nations Protection Force conducting humanitarian operations during the Bosnian civil war, I experienced the first symptoms of what was subsequently diagnosed as MS.  Within a year, I was wheelchair dependent, incontinent and my wife became my full-time carer. My career options in the Army evaporated.

My first contact with social care was at RAF Headley Court, where I was undergoing rehabilitation. The community occupational therapist (OT) introduced me to the benefits and allowances that were available and the range of support I could expect in the community. I was very lucky that this service was available, due to the unique nature of the forces’ rehabilitation centre and its secondary role of preparing those unfit to serve for discharge.

After discharge on medical grounds attributable to my service, I spent 23 years in defence industry, working in consultancy, advising senior MOD and industry personnel.

When we moved into our new home in North Dorset, the community OT conducted a home assessment and produced a care plan. The plan was reviewed every six months, but OT visits and reviews diminished and stopped, as social care provision was reduced. For the last 7 years, the only routine monitoring of my circumstances has been conducted by the community MS service.

From an early stage, I learnt where the boundaries between social care and health care provision lay. No one is there to tell you, there is no manual and you have to find it out through bitter experience. For example, mattresses and other bedroom-related items fall under the jurisdiction of the health service; bathroom equipment lie within the purview of social care. Continence supplies are provided through healthcare, but are used by social care personnel, in my case, my wife.

There have been times, over the last 26 years, when we have needed direct intervention by carers; when my wife has been away on holiday or has been unable to look after me due to illness or injury. We have resorted to private carers. Initially, we contracted an agency, due to a sudden emergency. Subsequently, we used freelance carers found via advertising in the local press and now have a couple of ‘go to’ carers we can call upon.  

I gained further experience of the interface between health and social care, in the form of Continuing Health Care (CHC), when my brother-in-law spent the last weeks of his life with us. All the necessary approvals, arrangements and equipment deliveries were in place to enable him to move to us within two weeks of his diagnosis. We learnt how swift and compassionate the “system” could be, compared to the bureaucracy that we experienced.

Another example of this bureaucracy is I discovered that my wife was entitled to 20 hours of funded respite support per quarter to enable her to have a short break. However, the level of care on offer didn’t meet our needs. It did not include anyone that could help me in and out of bed or manage my daily continence needs: merely someone to ‘sit in’ for an hour or two.

Andrew Johnston giving a speech at fundraising event Wincanton racecourse scaled

My military and business experience, MS diagnosis and lived experience offer a unique appreciation of the challenges in health and social care. There is a gulf in the perception of skills required in health and social care respectively. The former are seen as skilled, the latter as unskilled. I disagree wholeheartedly. Those working in the social care sector require very similar, if not the same, skills as those involved in nursing and nursing assistance. To that end, a common or parallel grade and reward structure should be put in place. 

The title, “Department of Health and Social Care” provides the illusion of an integrated system. However, the gulf between healthcare and social care is exemplified by the fact that social care is devolved to councils to administer. There are too many borders, roadblocks, confusion, and red tape. I would like to see a porous boundary where resources and effort flow as seamlessly as possible between health and social care, even if this means putting social care funding back into the hands of the Department.

There seems to be a lack of social care leadership. Lots of health leaders seem to be in charge of health care and “banging” the drum for it, but who is speaking up for social care and leading the charge in the Department and in the public domain? All too often, responsibility seems to be left to organisations like the National Care Forum to “bang the drum”. Only dynamic leadership can make the changes needed to make health and social care integration a success.

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