The 'C' Word VII: Caring (for carers)

Posted by Jenni Remnant

Last month I attended ‘Caring for carers: developing good practice for carers in Newcastle’. Over 130 people were in attendance -  a mixed bag of commissioners, health and social care providers, third sector and voluntary organisations, and student representatives from both Newcastle and Northumbria University. 

The day began with acknowledging the scale of the ‘problem’. Guy Pilkington, Clinical Chair of NHS Newcastle West Clinical Commissioning Group described the issue as ‘under recognised, under supported, and under resourced’ in his opening talk. 

We went on to learn from Ewen Weir, director of wellbeing, care and learning at Newcastle City Council, that a recent study from Leeds estimated the national value of the free labour of informal carers per year is £119 billion. He asked us to imagine if informal carers around the country went on strike, and suggested to us that if informal care ceased, the system - which is already ‘creaking’ - would fail.

Throughout his talk Ewen drew on his own experiences of caring, and described sometimes emotionally, how despite his expertise, he struggled to navigate the system when attempting to access care for a family member. He told the audience that the issue of informal care is ‘ignored at our peril’ and explained that it is expected that by 2017 we’ll reach a tipping point, where demand will outweigh supply.

Atendees were introduced to the numbers in Newcastle according to the 2011 census. We were informed that of our population (279,100), 27,644 reported that they provide unpaid care: 6822 of these for upwards of fifty hours per week. As might be expected the emotional wellbeing and mental health of carers was considered a public health concern, and in the group work the physical dangers of some carers’ situations were highlighted as risky.

‘Open Clasp’, a local theatre company, gave us a further reality check. In two brief scenes they portrayed the story of a carer who ends up putting her mother into a care home. Two actresses showed with painful clarity the difficulties faced by unpaid informal carers and paid care assistants. It was difficult to watch and - judging from my experiences, and the experiences of people close to me of both caring roles - totally accurate.  

Your Person Centred Plan

We discussed throughout the day the introduction of the Care Act (2014), that is said to be ‘built around the carer’, provide more clarity and put carers on an ‘equal footing’ with the ‘cared for’. A diagram was used to illustrate this, which for those who know, looks very similar to illustrations of person-centred planning (see diagram above). This is where the person in receipt of service provision is placed in the middle and a plan of support is created to surround them. It was interesting in this respect to visualise this model, whereby someone with a person centred plan might be being cared for by someone else with a similar service plan. Could all this ‘planning’ actually get in the way of the caring?

Another interesting feature was the lack of discussion about the ‘cared for’. I have been inclined to argue (evidenced in past blogs) that while disabled, ill and older people are chronically undervalued by society, it doesn’t seem beyond the realms of imagination that the people that care for them might be undervalued. That said though, feedback was given to us that the top three issues for carers, as identified by carers, were: their mental health and wellbeing, their emotional health, being able to have a break, and accessing information.

I looked forward to when the audience had the opportunity to put questions to a panel which included commissioning representatives, a carer’s champion GP, Council representatives and Katie Dodd, the Chief Executive of Newcastle Carers. The questions were kind and focused on shared/combined budgets between clinical commissioning groups (CCGs) and local authorities and information sharing, in essence, the nitty gritty application of rhetoric to reality. Although, following these questions, all parties seemed to work on the assumption that the energy in the room would be maintained and turned into action. The inappropriate care responsibilities placed on young carers was a hot topic throughout the day, and one attendee asked: ‘what is an appropriate caring responsibility for a young person?’ to which the answer was that being a carer is always an inappropriate role for a young person. The time they spend caring should be the time for their education, learning and growing. Something we could all agree on.

The day held some ideological issues for me. I struggled with discussion of carers, without the voice of the ‘cared for’ (although I find this descriptor in itself uncomfortable). We also very infrequently visited societal and systemic issues beyond just care, such as the undervaluing of the ‘cared for’ that I mentioned above, as well as issues around class and gender.

The day scared me, despite my previous experiences and reading around the subject, I had not understood the pressing public health concern that the care of carers represents. I am genuinely terrified by the implications of this. People are devastated by the strains of informal caring and a seemingly impossible system - it can be agony - and this is before demand outstrips supply.

The day motivated me, the use of the theatre company was inspired, and their agreement to be involved suggested a world of potential in terms of research and participant engagement and knowledge exchange.

There’s not much conclusion to this other than to acknowledge that a health crisis looms, in a context of cuts, closing third sector and voluntary organisations, and shrinking resources. Research will have a role, and probably more than ever we will have to think intuitively to keep up with developments. Certainly the practical application of the Care Act from April 1^st and its impact will be one to watch.