Carers Week – More than Words

Building Blocks of Art
‘Carers Week’ begins today. While the ‘official theme’ of the week is ‘In Sickness and In Health’ with a focus on the health of carers, I would provide my own theme from my position of having worked in social care for a fair few years as ‘more than words’.

Carers’ need more than accolades in order to feel supported and be supported properly. We need to be able to provide resources and that needs money.

Over the last 15 or so years, there have been definite changes in the status of ‘carers’ in social care organisations.  We have rolled out ‘Carers Assessments’  and have been able to provide services for carers directly as a result of new legislation. While we  assess the needs of carers – what we don’t have and where the disconnect exists – is a duty to provide services and nor national criteria about where a service should be and must be delivered.

The problem I face all too often is revolves around carrying out Carers’ Assessments (of course there is a target for these) but not being able to actually provide anything as a result of them. To which the obvious question I am asked is ‘Why do them if they only provide information to the Local Authority?’.  My local authority, fortunately and for now, at least, is fairly generous with carer support and direct services but this is by no means universal.

Mother watches over

I have been fortunate to see and provide some excellent services through direct payments made to carers and in a lot of ways, the services I have been responsible for providing as direct payments to carers have been a lot  more successful than some of my experiences with direct payments more broadly. I am able to encourage assessments with the possibility of a direct service provision as a result but I know this is by no means universal.

Assessments in themselves can be useful if they are conducted well and sensitively. Sometimes allowing a carer to have the space to discuss their own needs and explain fully the care they are and do provide and the effects that this has on their own wellbeing/goals and lives can be valuable – however there comes a point when this has to be acknowledged in a more ‘real’ (and yes, that can mean costs) way than smiling and nodding. More than words.

I’ve also seen an increase in the ‘posting a carers assessment out’ style of assessing which can lose some of the subtleties gained in a conversation and a visit. Of course, not everyone wants an assessment because the language and the questions can be formalised and particularly we get the ‘I’m not a carer, I’m a spouse/child/parent’ response but I’d counter that’s something that can be addressed by a change in the way of ‘paper assessment’ and the language and discourse models that exist around social care. Why can’t we be more flexible regarding what an assessment actually is? Do we have to ask the questions on the form?

We give, others receive but that’s a tired model – particularly in relation to carers who give us, as a service and organisation – much much more than we can ever give them.

So why is it reduced to a paper assessment logged onto a computer database? Because that allows performance indicators to be met.

My ideal service would be more flexible about the ways that assessments are compiled and would allow much more for free text and less on box ticking. Box ticking can help some clarify but it by no means captures what role caring plays in all lives. ‘Caring’ is not uniform. There are a myriad of needs and a myriad of ways to both communicate this need and for support to be delivered – or there should be. If people want boxes to tick, by all means provide them but if they want open space to discuss or write or record what and how they feel about their role and what might help, then allow that too.

We also (in social care) need to work on our assumptions a lot. Families exist in different ways and have different histories. There may be many reasons that don’t need to be disclosed about caring may be more difficult in particular situations and assumptions can be very damaging.

The new Adult Social Care White Paper is imminent, apparently. There needs to be a commitment not just to assessments of carers but of delivery of services and support to carers. More than words.

While the government talks about ‘respite’ and the need for breaks, I’d argue that is essential but while the provision of services is being cut and there are fewer, more distant places to offer respite the realities will remain as far from the government planning as they are at present. Capital investment and investment in decent staffing in homes that offer respite consistently would help. Clear explanations about entitlements and potential costs would help. Services that speak to each other would help. Pooled budgets would help but the easy words come thick and fast. The solutions can’t be found by words alone.

The current system as it exists relies on carers significantly to ease the burden of cost of the social care system. This needs to be more transparent in terms of publishing details of how indicative personal budgets are arrived at and the amount that is ‘saved’ by a carer. If some of these ‘savings’ (not even a minute proportion – but some ) is ploughed back into effective and personalised support with professionals who are able to access and feedback good, local information and provide support and training to carers where they want it the savings over the long term would be much higher.

The cost of poor support for carers is much much higher than the cost of good support – but in these times of ‘belt-tightening’ it can be forgotten while we reach the goals of short term savings.

It’s a lesson that both the NHS and social care systems would be mindful to heed.

In order to support carers ‘In Sickness and In Health’ the government, the organisations such as the NHS and local authorities, employers and communities needs to provide ‘more than words’.

Images by W4nd3rl0st at Flickr and Sapphiren at Flickr

8 thoughts on “Carers Week – More than Words

  1. “It’s a lesson that both the NHS and social care systems would be mindful to heed.”

    Yes but until people understand that front-line providers i.e. those that do the actual work are individually far more important than the bureaucrats who have little raison d’etre. Of course there is a permanent need for oversight, monitoring, resource allocation and all the rest but the whole system is grossly over-managed by people who spend their energy enhancing and defending their own positions while wilfully ignoring real needs out there. The government induced depression will demand more from fewer. Caring often involves literally shitty work; the need for carers is rising as the population ages yet the pickling of provision does nothing to help those in need 😦

  2. I found this very emotional to read, the subject being a very personal one for me. Whilst it had not been my own experience, it is heartening to know that out there somewhere is at leadt a smattering of frontline staff who understand what it is to be a carer.

    Thank you for writing this. I hope you will keep trying to improve things in this area. I’m a great believer in ‘little by little’. Even tho that will be too late for today’s carers, maybe those who follow us will have better support.

  3. Pingback: Today in healthcare: Monday 18 June | Birmingham Link

  4. Well said, Dear Heart!

    However, locally in mental health Carers’ Assessment is in the hands of the National Schizophrenia Fellowship (as it’s still known to the Charity Commissioners) aka Rethink aka Rethink Mental Health, an organisation founded by middle-class parents to compel their service user offspring to conform to the medical model – “Mummy knows best, darling”. I attend a carers’ art group that I mistakenly thought was run solely by the local Trust, only to find a bunch of intrusive forms given me to fill in, wanting all manner of detail about my wife’s behaviour in the name of elfin safety (she never goes near the group) and wanting carte blanche to use confidential info as they saw fit. Much of it seems to run directly contrary to the Mental Capacity Act. I refused to fill in the more sensitive parts of this bureacrat’s birthday present or give such permission and have made it clear to the Trust art therapist that I regard her as the gatekeeper of any information, which she may use as she sees fit without constant reference back. There is is a Rethink person attached to the group. She’s a nice lady in an impossible position and I do sympathise. I do wish Trusts would make more effort to deal with a variety of organisations with a vrity of approches, not just the obvios one that makes easy for managers but not for users or carers,


  5. good points as usual frustrated at the lack of services we can actually offer as a result of assessments and our respite service which was at a NHS unit is ending as no longer funded under PbR so if anyone needs respite we will have to look at the private sector with the additional need for financial assessments and having to take cases to panel if we can find anywhere that will take people under 65 with serious mental health conditions.

  6. I am 85 and have been an informal (unpaid) carer most of my life because of family health problems. I am still the lone carer for my disabled son. Though, also, I brought elderly/infirm parents from their council flat to my home to care for them, unaided, for 17 years, I have never been eligible for Carers\’ allowance. About 30 years ago when I had to give up my job to care for the three of them I did not realise at the time that I was suffering from a breakdown. Although my relatives and I have never broken the law I, for no reason, twice shoplifted and had to appear before a local court. I was treated as a criminal – which I suppose I was – but bound over at the time. When I told a psychiatrist that I could not understand why I had not collapsed after all my years as a carer – both voluntarily and as a paid full-time social worker – he replied that shoplifting was my way of collapsing. I suppose that there is and was such a shortage of psychiatrists that I received no treatment, but managed to shake myself out of it I think. Eventually, after my parents died (at my home – both in their 90s) my son and I were able to take a holiday, after many years, in Disneyworld, Florida. That was the best treatment we both could have had. As my son said to me afterwards, ’Mum, you were able to come out of your shell!\’ I read in the press that
    ”Millions of people who are forced to juggle work and family life with caring for elderly relations are to be given legal recognition and rights to respite holidays for the first time”
    It seems to me that this is just another ploy of the government to distract the attention from the fact that the Carer’s allowance is so paltry and that many, like myself, have been carers for years and never been eligible for any allowance at all

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