Neil Churchill: What I learnt from my day with carers

I was sitting in the kitchen with the first carer I would shadow when his mobile rang. It was his mum’s social worker calling to discuss what would happen when a respite placement ended. As he spoke, his landline rang and another social worker left a message. Today was the “eye of the storm” in juggling his own disability with caring for a mother and father who had both lost their independence, and who needed round the clock support.

“Welcome to my world,” he said as he came off the phone.

‘To him, care was fragmented and not a system at all; he was the only one who held all the pieces’

This was the start of a day organised for me by Carers Support West Sussex, as part of their efforts to help me understand the experience of being a carer, so I could be more effective at delivering NHS England’s Commitment to Carers.

Rather than shadow a single individual, they suggested I meet a number of carers in their homes to hear about their experiences and suggestions for improvements.

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Although I knew carers are a diverse group, the day really brought this home to me. I met a man caring for two parents: one with dementia, the other with a chronic illness; two more parents were caring for a son with mental health problems; and a young woman was looking after a husband with a rare debilitating brain condition. In between, I met a group of carers at a mosque open day.

Although they had much in common, there was also much that was different.

Lack of coordination

Looking after two parents and living with a disability involved two social workers and a number of different NHS teams. It was troubling to hear about rushed or inappropriate discharges from acute hospital care when family support and domiciliary care was not ready.

‘There was largely an absence of the proactive, anticipatory care people sometimes need to support themselves’

I also saw the efforts that this carer put into keeping all agencies informed, as information and even referrals did not pass efficiently through the system. To him, care was fragmented and not a system at all; he was the only one who held all the pieces.

A local care coordinator, he thought, could help keep carers informed about finances, benefits, care options and local sources of support.

Although her son’s mental health problems were now largely well managed, the mum I met described how she had been ignored when her son hit crisis point a few years ago. It was vital to ensure that carers were supported at such times, as it was frightening and confusing when her son was first sectioned.

Her concern now was to achieve a shift from management to recovery in his care. Although she felt well involved in her son’s care and treatment, she worried about how he would cope when she was no longer there to care for him.

Again, there was largely an absence of the proactive, anticipatory care people sometimes need to support themselves.

False assumptions

The young couple had different problems. Being young, few had seen the wife as a carer for her husband. This had placed her in some difficult positions, including making a weekly 70 mile round trip with two young sons to collect the many medicines her husband needed, not all of which would be ready for collection, and incurring a £20 parking fee each trip into the bargain.

‘Feeling isolated and lacking support can push carers to crisis point and it’s vital that we listen and react sooner’

Her husband said that living at a distance from the specialist centre made it harder to get help. There were no Skype consultations and his condition left him easily exhausted and travel was difficult.

No one had known that help was available when they first started to look after someone. It was only later that they made contact with support services. This reinforced the need to provide better signposting and information, everywhere from GP surgeries and pharmacies to within individual communities.

I was struck how assumptions could be barriers to asking for help. Some of the carers at the mosque told me that people often assumed you only got help if you could pay for it. Of course, that is true of some social care but there are still allowances and entitlements, and the voluntary sector and NHS provide fantastic services for free.

Signposting support

Feeling isolated and lacking support can push carers to crisis point and it’s vital that we listen and react sooner, signposting help that exists locally.

‘There was a sense that integration was starting to happen, rather than being a talking point’

Although all the carers I met shared poor experiences, there were good experiences too, and there were some really interesting new developments that bode well for the future.

On the whole, people thought that services for carers in West Sussex were good. Carers were kept better informed and felt more involved. Outreach teams were in place, looking to deliver more proactive care.

I was especially pleased to meet members of the carers’ health team at Sussex Community Trust, a group of nurses who visit carers in their own homes to help them stay well and manage health needs. They were clearly trusted by many of the carers I met at the mosque and the service was widely praised.

Integration in view

There was also a sense that integration was starting to happen, rather than being a talking point. The local clinical commissioning group chair talked me through his focus on wellbeing and how services would develop to meet carers’ needs. Quality services already exist locally, he told me, and the leadership is there for the next step.

The challenge was in getting the right workforce, as too many roles in this expensive part of the South East are vacant. Individual budgets might also give parents and carers more flexibility, but this would mean little if there was no market to provide genuine choices. There was a lot of work to do.

Our next step with NHS England’s Commitment to Carers is to help change come about more speedily by bringing together examples of good practice at a series of workshops over the summer and see what is working, as well as how and why. 

We need to learn from each other, do what works at scale and ensure that we measure effectiveness of different interventions. The NHS cannot provide the high quality, sustainable care people need unless we recognise, involve and support carers. There is no better place to start than with the lived experience of being a carer.

Neil Churchill is director for improving patient experience at NHS England