Monday 21 July 2014

Special Measures – My view

Last week's announcement that adult social care providers who deliver sub-standard care face being put into Special Measures from April 2015 proved to be quite a momentous event for me. I was involved in the announcement (details here), and it understandably produced a lot of mixed reaction.

I'd like to use this blog post to clarify some of my thoughts around this issue in more detail. The singularly most important thing to stress in this debate is that the majority of care is good care. I have written extensively about the amazing care my father received from many dedicated and caring professionals (for examples see: 'Continuity is key', 'Sense and simplicity', 'End-of-life care - A very personal story') some of whom are still good friends of my family. The coverage I have given to the positive aspects of my father's care on D4Dementia and elsewhere far outweighs coverage of our negative experiences.

It is widely known that adult social care has a poor reputation, badly tainted by the actions and culture of a minority whose conduct hits the headlines in a way that the many positive stories of wonderful care never do. Yet, as I said in my statement in the press briefing for the Special Measures announcement, "Most care is excellent. Most care workers are dedicated, and often undervalued, professionals". 

I am the first to acknowledge that there are huge issues in the recruitment and retention of good care workers (see this blog post), and that the terms and conditions that many work under fall well short of the professional standing and associated remuneration that I would like to see given to care work. But none of this is an excuse for poor care. Many good care workers have terms and conditions of employment that do not fairly reflect the work that they do and yet they still deliver great care, and of course the many volunteers who help to prop up services earn nothing at all and often make an amazing contribution to the lives of vulnerable adults. 

None of that in any way belittles the issues around employment of care workers, but aligning debates about employment with debates around poor care almost gives the impression that unfair employment conditions are an excuse for poor care, when there can never be an excuse for poor care. I know for a fact that the many wonderful people who cared for my dad weren't paid enough, or valued by their employers as they should have been (one of my dad's care homes had 4 different owners in the time he lived there), but they were fundamentally dedicated and caring people who did amazing work in often very difficult circumstances.  

In terms of the proposals about Special Measures, many people have asked me what will be the difference between Special Measures and the powers CQC have now to issue warning notices and if necessary take action to remove the registration of a provider and close a service. To clarify, CQC have been asked to develop a Special Measures regime for adult social care by the Secretary of State. That process will begin in autumn 2014 and be done via the Adult Social Care Co-Production group that I am a member of. At present, the in depth details of what Special Measures in adult social care will look like are still to be decided on.

In the meantime, I have my own personal 'wish list' that draws on the experience of poor care that we had in the last 6 months of my dad's life. This list includes:

1) Timely intervention - Often vulnerable people don't have weeks and months to wait for improvements to happen. If the 'care' they are receiving is acutely failing, it could cause serious injury or premature death.

2) Targeted intervention - A Special Measures style intervention should, in my view, directly address particular concerns by signposting to resources that can make an immediate difference to the lives of the people receiving a care service. There are loads of great resources available, and accessing them doesn’t necessarily require a provider to spend a lot of money. We are very fortunate in the UK to have The Social Care Institute for Excellence and Skills for Care alongside many other innovative and highly effective national and local organisations, businesses, charities and community interest companies that can provide guidance, practical resources and be catalysts for change. Indeed, independent of regulation some care providers work with me in a consultancy capacity to evaluate, improve or change aspects of their service, so there are many proactive and forward-thinking providers out there already.

3) Sensitive intervention - It is vital to be mindful that a care home is the home of the people that live there. In my view Special Measures must do everything possible to turn a service around in a timely and targeted way without the people that live there having to find a new care home, unless of course those people want to find new care home. Having to move can be very distressing, and again possibly hasten a person's death is they are particularly frail or have advanced dementia.

4) Public accountability - I hope that, like with hospitals, Special Measures will provide clarity for families about the status of a service. Families aren't stupid - they know when care isn't good enough, but generally they are often too afraid to speak up. They need to see CQC taking firm but fair action that addresses shortcomings if a service isn’t safe, caring, effective, responsive and well-led. As part of that process, I would like to see all providers actively working with families in a renewed effort towards teamwork and inclusivity in the day-to-day life of a care home.

So how are care providers likely to react? In my view, if you are a good care provider you have nothing to fear. If you are a provider who is found to have a service that is delivering sub-standard care but you are prepared to work hard on turning that service around you have nothing to fear. If, however, you are a provider of a sub-standard care service and you are complacent and disinterested in improvement then you are a danger to the people who rely on you (people receiving your care, their families and any good care workers that you employ), and anyone who may come into contact with your service in the future. It is then the role of CQC to take action and it would be indefensible if they didn't.

There is some disquiet that putting a service into Special Measures will mean that the provider cannot maintain their revenue stream if one of the conditions of Special Measures is to prevent the provider from having new admissions to their care home or new clients to their homecare service. This, however, isn't new - there was a period when one of my dad's care homes was closed to new admissions due to safeguarding. In my view this actually helps providers; it enables them to focus on their service and the improvements that are needed without the added responsibility of caring for more people, and it safeguards the public from anyone else coming to harm whilst the service implements improvements.

Is privatising care the reason poor care exists? In my view poor care can occur whether the provider is making a profit, is a not-for-profit or indeed is a public sector organisation. The causes of poor care practices are, more often than not, centred around the culture of an organisation, its leadership and in some cases individual staff teams or members. Can hospital-style Special Measures work in social care? No, because clearly there are significant differences between hospitals and social care, but there are certainly some positive examples of hospitals turning themselves around as a result of being placed into Special Measures.

Can CQC be trusted with this? As is well known, CQC didn't provide us as a family with the support we needed when my father was alive, but arguing about the regulator isn't going to change the fact that they are still the regulator. Working with them to improve social care, celebrating the outstanding examples of care and uncovering inadequate care is the only option in terms of the regulation of UK health and social care services. As I have said in the past, inspection - however rigorous and informed with intelligent monitoring - will still only be a snapshot of a service. Whistleblowing is as vital now as it has ever been, whether you are a person receiving care, a family member or a social care worker.

I believe as a country we owe it to every person who needs social care and their family to ensure that care is the very best it can be. I will always champion that regardless of who is in government and who the regulator is. I feel passionately that we must be the change we want to see, and constantly strive for improvement and the eradication of poor practice.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 7 July 2014

Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886