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...

You can follow me on Twitter: @bethyb1886

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Paid to care

When you go into any care setting, either as someone needing care or their family, you naturally expect that everyone who is looking after you or your loved one has been given all the skills that they need to provide that care safely, compassionately and confidently. What you might not realise is that aside from those people who you automatically recognise as being professionally trained and accredited (doctors, nurses, occupational therapists, physiotherapists, radiographers etc), those who assist them in providing care aren’t afforded the same professional status.

Although standards have been laid down by the Skills Councils for Health and Social Care, there is no robust system for ensuring that these are met, leaving the training and development of Healthcare Assistants (HCA’s) in hospitals and carers in social care settings (care homes, domiciliary care etc) very much open to interpretation and varying levels of implementation. In addition there is currently no defined path of career progression for those who seek it, and no professional body that offers registration for this huge number of care workers (unlike the RCN for Nurses or the BMA for doctors).

During my father’s time as a hospital inpatient, I would say that the majority of his care was provided by HCA’s. They were the ones charged with checking his vital signs, turning him to prevent pressure sores, changing his incontinence pads, and helping him to wash, eat and drink. Nurses were always on the ward, but clearly not enough of them for the number of high dependency patients, let alone with sufficient time to support their HCA colleagues.

Indeed, such were the tasks undertaken by HCA’s that many visiting relatives actually believed that they were part of the nursing staff. Yet HCA’s, despite the vital work that they do, clearly aren’t valued by our healthcare system. Without the professional standing of their nursing colleagues, HCA’s are effectively a cheap labour source for employers. Many are working on grossly over-stretched hospital wards leading to their duties creeping ever more into the realms of full-blown nursing. In monetary terms it costs far more to employ additional nurses than it does to ask HCA’s to complete some nursing tasks, but this is a dangerous game to play with patient’s health and wellbeing.

The situation is no better in social care, with carers in care homes and domiciliary care again providing vital support to often highly dependent vulnerable people under huge pressure, often inadequately trained or supervised and feeling very undervalued. Whilst some care providers constantly update and evaluate the skills of their workforce, others provide much less effective training for their staff, putting those who are receiving care at huge risk. Training doesn’t need to be complex, degree-style education (see this blog post), it just needs to be logical, natural and above all effective.

How this situation has gone on for so long is a mystery to me. We regulate health and social care services and demand high quality care, and yet that isn’t followed through with a framework that invests in and supports the very frontline staff who are charged with delivering this. I’m not suggesting that training and qualifications are the answer to all of our problems in care, far from it. On many occasions I had to educate both nurses and HCA’s on how to care for my father in aspects such as his swallowing problems, communication difficulties or behavioural issues. I do, however, feel that as patients and relatives we want to know that care provision is considered sufficiently important that it warrants a professional standing within our society, with the relevant standards and rewards in place, adhered to and monitored.

Currently, many HCA’s and carers working in social care earn less per hour than you might get as a cleaner or refuse collector. Whilst the latter two examples are important jobs, surely being in a position where you could potentially influence whether someone suffers pain, harm or ultimately lives or dies as a result of the care you provide is somewhat more important. I also believe that the role of HCA’s and carers in social care settings is one that their more qualified colleagues would also want to carry greater recognition and professional standing.

Nurses and doctors on busy hospital wards would be the first to admit that they would be lost without HCA’s. An effective care team cannot function without people who provide the basic care that is so vital to a patient’s recovery and comfort. Indeed, I would argue that the role of HCA’s goes beyond just providing care, but also moves into the realms of social interaction with patients, and provides vital opportunities to learn more about a patient or to spot changes that could indicate a problem or decline.

Looking at the role of HCA’s in that light, you suddenly realise just how important they are in a care team. So why don’t we train them to a higher, universal standard, give them professional recognition and pay them more money? The simple answer is because it’s cheaper not to. But does it represent good care, or indeed the model of care we want for ourselves or our loved ones? No.

In my opinion, for far too long those who provide frontline care have been marginalised, undervalued and seen as the workhorse of public and private sector health and social care. There has never been a more important time to change this situation if we are truly serious about delivering high quality care across all sectors. I believe most HCA’s and carers in social care would want this, their colleagues would support such a move, and most importantly of all patients and families would know that those looking after them at some of the most difficult and sensitive moments in their life are recognised and valued professionals within our society.

Until next time...

You can follow me on Twitter: @bethyb1886

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Putting your head above the parapet

Anyone who knows me will confirm that I am not afraid to speak up, firmly but fairly, if something is wrong. With TV programmes and magazines extolling the rights of the consumer, complaining about goods and services is something most people will do without hesitation. When it comes to complaints about issues of health and social care, however, a chilling fear of the malevolent intentions others may have as a result of what you are going to do or say can put you in that most impossible of positions – do you speak up, and if you do, will there be unexpected consequences?

Over the course of my father’s 19 years with vascular dementia there were numerous occasions when things went wrong, particularly in care homes. Small issues like missing clothes, giving the wrong food or drinks, or not showering him enough were easy to tackle with staff who, whilst often overworked, were generally conscientious and wanted to put things right, but much bigger problems proved far more difficult to deal with.

As a loving, caring family, you want the best for your relative, wherever they are and whoever is looking after them. People with advanced dementia cannot speak up for themselves, and whether your battles are with care home management, hospitals, care agencies, PCT’s or social services, it can easily become an all-consuming, personal quest for the care, justice and fairness your loved one deserves.

Generally most official complaints procedures would like you to start and end your complaint with the lowest level manager that they can delegate your issue to. Often, however, this person will not have the authority to overturn decisions or will try and wrap your problems in red tape, with protocols, procedures and lengthy time scales. Going higher up the management structure will often result in more bureaucracy, if indeed you can ever actually speak to and develop an understanding with someone who can make the changes you want.

Complains in health and social care are generally very personal, yet you are often left dealing with people who have no personal feeling for the subject in question and therefore no understanding of where you are coming from. Frustrated and exhausted, do you resort to more public methods to fix the broken part of the system that you are in?

Many people have asked me why I never started D4Dementia sooner – 19 years, they say, is a long time for my father to have had dementia, and sharing those experiences along the way could have helped and supported many others on their own dementia journey at that time. Whilst this is very true, and our story has many positive aspects, starting the work I am doing now when my father was still alive would have also meant publically exposing when things went wrong, a concept that filled me with a genuine fear that my father’s care would suffer.

The care system can be very political, secretive and unnerving, and when dad’s care deteriorated  to a point where he was suffering (as I wrote about here), whilst I was tempted to make his case an example to the UK, at the same time I felt the price he may pay would be unbearable. As it was, involving senior management from the care provider, and eventually CQC and other agencies in the months prior to my father’s death, left us ostracised, isolated and the subject of lies and rumours from the home management. Furthermore, given the circumstances in which the pneumonia that killed my father manifested itself, I will now always wonder if he was targeted as a resident with a family that they simply wanted to get rid of.

There is a pervasive fear amongst families of older people who cannot speak up, or indeed amongst the elderly who could speak up themselves but live in fear of doing so, that the lives of the older generation are considered to be worth less than their younger counterparts. Many elderly people often feel very vulnerable, alone and frightened, languishing in hospital beds or in care homes with problems that they would like to voice but fears that their care will suffer if they ‘get someone into trouble’.

Anonymous whistle blowing is great in theory, but often the channels for doing this are unknown or not trusted, and as a result underused. Regulatory bodies that are designed to protect vulnerable people, like CQC, can be unapproachable and unhelpful, and as we all know, sometimes it even takes undercover reporters to expose bad care.

When you put your head above the parapet you should be assured of knowing that you will be listened to and action taken swiftly and fairly. Driving up standards only happens by finding and eradicating instances where people are at risk of harm, abuse or even death. Complaining about bad practices, decisions, poor care or management should be something people feel that they can do freely and in confidence. Sadly many people do not, and if my father was still alive I would not be sharing our experiences with you now, so there is still much to learn and change about the way the UK approaches complaints about the most important issues of all, those of life and death.

Until next time...

You can follow me on Twitter: @bethyb1886

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Going for gold

As the medals have accumulated for Team GB at this year’s Olympic games, I have often caught myself wondering how amazing it would be if we could translate the dedication, talent, will-to-win, perseverance, commitment and self-belief that our sports men and women have shown at London 2012 into the people whose decisions, policies, beliefs and understanding (or lack of it) affect the lives of the most vulnerable in society.

You cannot work in dementia care, be a policy maker or decision taker and consider it to be just be a job, something that you do to earn your living and then walk away from. If you do, then you are in the wrong profession. If our sports people did not go the extra mile, care that little bit more, put in the hours and believe in better then they would not be where they are in the medal table.

One of my greatest frustrations is that while many talented people work in jobs that shape the current state of dementia care and influence the future of it, too many do not feel the passion for the subject that people like myself, and the many #dementiachallengers out there do. Conversely, at the grassroots, many people who work in dementia care feel a huge sense of pride in what they do, but are often restricted by protocols, policies and procedures that dilute their passion and knowledge so much that they are prevented from bringing their true care and compassion into the things that they do.

Passion is often mistakenly identified as being uncontrollable, unquantifiable and therefore a risk to stability, but it is needed more than any other quality when you are looking to transform the lives of those living with dementia. As people struggle on at home without the help, support and advice that they need, as they languish in acute hospital beds while bureaucrats argue over the care package that they should receive and how it will be funded, as they die needlessly because they are not properly cared for in a residential setting that does not meet the standards it should, is not staffed correctly or lacks the most basic understanding of dementia, passion is what is needed to drive up standards, change systems, improve the rates of diagnosis and the outcomes for people afterwards, make therapeutic care choices fundamental to everyone’s journey with dementia, support families and friends, educate the wider community, engender respect for the person, and provide dignity, compassion and personalisation in every aspect of dementia care.

Passion is about caring so much that you would go to extraordinary lengths to nurture and protect; qualities that are essential when you think about caring for people with dementia. Passion is also about understanding – having a real, intrinsic feeling for what life is like for someone with dementia and their loved ones, sharing their pain and their joy, striving to help them have the best life possible, and most importantly of all, seeing the person, not the disease.

For many people with personal, hard, honest and painful experience of dementia, their passion also has to translate into fighting for what their loved ones need. Often in the most difficult circumstances, where their relative’s future, even their life, hangs on the decisions of others, there is nothing more frustrating than knowing that you must convince people with no real passion for dementia, who work within frameworks devised without passion for dementia, to understand why you care so very very much.

Numerous people in authority talk about dementia having never personally experienced it. Many professionals work in influential positions for health and social care organisations, charities, government and the like who could walk into any job in their chosen sector; the fact that they work influencing the lives of people with dementia is more by accident than design. Changing this culture, and getting the voices of people with true passion into places of most influence, will transform how dementia is viewed, treated and understood.

Too many people still see dementia as a lost cause. It is true that changing perceptions takes time and patience, but it must also be borne in mind that for the people living with dementia right now and their families, they are left to struggle on, often in the dark about the journey they are on, feeling lonely and isolated, even ostracised from society. Dementia, because of its complexities and the individual nature of everyone’s journey with it, will never be able to have a one-size-fits-all model of care; something that everyone with a true passion for dementia recognises instantly. Just like our sportsmen and women with their Olympic triumphs that have given the whole country such a huge sense of pride and achievement, their journeys to gold have been individual to them, born from the passion that they have for their sport. The journey to gold-standard dementia care in the UK is still some way off a podium finish, but would be an even greater achievement for our country.

Until next time...

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