Geraldine Cooney, NHS Programme Regional Officer for Shared Lives Plus, writes a guest blog about her work with NHS England.
Six Shared Lives carers supporting people with health needs, recently talked to Lindsay, Shared Lives Officer and I about their experience in Portsmouth. They were full of insights and advice on all aspects of how Shared Lives supports people with health needs, raising some questions and issues that we will have to address, as well as coming up with ideas to help make the project a success.
Throughout our conversations I was struck by the Shared Lives carers matter-of-fact commitment to the health of the people they supported. They tackled health problems and issues as they arose - as they would with any family member – and saw health related tasks as part and parcel of their role. Their belief in Shared Lives as intrinsically health and life enhancing came through loud and clear. They were in no doubt about the value of what they do, and the rewards they could see in front of them seemed to counteract the demanding nature of their role.
These Portsmouth Shared Lives carers people were providing a home for people with substantial and complex issues from epilepsy and diabetes to people living with mental ill health, self-harm and incontinence. They had initiated reviews of medication, become adept at administering injections and developed ongoing relationships with health professionals. As issues developed and chang
ed over time they said they ‘just got on with it’, gaining skills and expertise as they went along, together with the person they lived with. Being at home is ideal for re-gaining skills and confidence, especially after a hospital stay, but they stressed that the person should feel ready and be safe for discharge. They warned that although most health professionals did not understand their role – they thought one couple were running a care home – once staff were aware of the support they gave this could be exploited. One Shared Lives carer described how the person she supports is regularly discharged too early after episodes of mental ill health, simply because of the high level of support hospital staff know she and her husband will provide. For Lindsay and I, this highlighted how important it is to raise health professionals’ awareness of Shared Lives to improve communication, respect and joint working.
But perhaps I shouldn’t have been surprised that Shared Lives carers were not fazed by the idea of supporting people with even greater health needs, when they are already doing such a wide-reaching job and have been doing so for many years. They all agreed that a Shared Lives carer should be ready for anything. We were given advice on recruiting Shared Lives carers, with the warning that if they had seen a job description in advance outlining the demands of their role, it might have put them off! For them, it was clearly all about the person, the connection felt and relationships made, rather than the tasks performed. They stressed the importance of keeping the Shared Lives model, maintaining the matching process and getting full information about each person’s background (not just medical history) before the arrangement started. They raised other important issues for the project such as house adaptations, accessibility issues and slow referrals that might cause Shared Lives carers to lose patience whilst waiting for matches.
The issue of pay came up; they felt the extra demands of their role should be reflected in their payment. For example, if somebody had complex health needs requiring them to stay at home during the day, or perhaps to be waking up at night, this should be recognised. But adequate respite for holidays and breaks was more important to them than pay – they said the basic four weeks of holiday should be increased for more demanding arrangements. Importantly, these Shared Lives carers stressed how important it was to them that the person in the arrangement was happy with the respite care provided. Several Shared Lives carers told us that they found it hard to explain to people why they had to move out of their home, and go somewhere not of their choosing for respite provision. They said that this was a worry and a problem that affected their own enjoyment of their break, and didn’t fit the family model, where you would naturally arrange your own cover for people who lived with you when you went on holiday. They said having a back up carer involved from the start of an arrangement would help everybody relax and enjoy their breaks.
These Shared Lives carers were great advocates for the people they lived with – and they understood their perspective might be different to their own. They could see that once people had found a safe, comfortable, happy home life in Shared Lives it might be difficult to give it up after health funding ended. ‘Who would want to leave?…it’s a no brainer.’ The conversation returned many times to the fact that it was the person’s home as well as their own, and that it was important that they all had choice and control over what happens within the arrangement, including when it ends.
I enjoyed meeting and learning from these Portsmouth Shared Lives carers. What struck me was that practical issues took second place to their overall concern for well-being of their Shared Lives family. One Shared Lives carer who had space for someone and was interested in working in health, talked of the possible impact on her existing family dynamic if she was matched with somebody with higher needs. She was considering the feelings of her existing match who might be jealous of her giving more time and attention to a newcomer. This sensitivity and consideration would be expected in the context of an ‘ordinary family’, and it reminded me once again of what makes Shared Lives and Shared Lives Shared Lives carers so unique and valuable.