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Hearing from carers first hand

23 July 2014

Neil Churchill
Director of Patient Experience, NHS

As part of Carers Week 2014, Neil spent the day visiting carers at their home and hearing their experiences first hand. Read about his day, and about the next steps for NHS England’s Commitment for Carers.


I was sitting in the kitchen with the first carer I would shadow when his mobile telephone 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. ‘Welcome to my world’ he said, as he came off the phone. Today was the ‘eye in the storm’ in juggling his own disability with caring for a mother and father who had both lost their independence and needed round the clock care and support.

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

Although I knew that 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 caring for a son with mental health problems and a young woman, looking after a husband with a rare debilitating brain condition. In between, I met a group of Muslim carers at a mosque open day. Although they had much in common, there was also much that was different.

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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. 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 and he was the only one who held all the pieces. A local care co-ordinator, 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 be able to 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.

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

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. New 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 NHS 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. There was also a sense that integration was starting to happen, rather than being a talking point. The local CCG 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 sit 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, 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 we need unless we recognise, involve and support carers. And there is no better place to start than with the lived experience of being a carer.

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