Kathy’s story - Living with a learning disability and dementia

Imagine reaching your 40’s or 50’s having lived your whole life in the shadows of discrimination, exclusion, social stigma and poor treatment within many health and social care services... and then developing dementia. You’re younger than the majority of people who live with dementia and your dementia is likely (either through our perceptions or the circumstances of your health) to progress more rapidly. You are now part of one of the most seldom heard groups in society** - People living with a learning disability and dementia.

This is an issue close to my heart: My longest serving consultancy client of nearly 5 years are learning disability provider MacIntyre. I count many of the amazing people they support and their awesome staff as both colleagues and friends, but it wasn’t MacIntyre who originally introduced me to what life can be like when you’re a younger person with a learning disability and dementia.

On the day my dad moved into the care home that he would go on to spend over 8 years in, we met Kathy*. She was a bubbly, smiley, caring lady, clearly much younger than my dad and every other resident in the care home. She loved to ask questions and talk to anyone who would spend time with her.

Kathy wasn’t living with Down’s Syndrome, which is the learning disability most people associate with the development of Alzheimer’s Disease. Her only visitor was her sister, an older lady, devoted to her younger sibling and fiercely protective of her. Kathy’s sister was one of the most active and vocal contributors to resident’s meetings, making her a firm ally of ours. I’m sure she told me more about the disabilities and health issues that had dominated Kathy’s earlier life on one of our numerous chats over a cuppa, but I don’t recall the details.

Kathy’s room was in the corner at the end of the corridor, almost as if she was somehow set apart from the other residents - I never knew if that was deliberate or not. Kathy spent a lot of time in her room, making multiple clothing changes in a day and immersed with her toys and dolls. It was one of the most cosy rooms in the care home with every spare space filled, including having a bird feeder outside and plants on the windowsill that Kathy tended every day.

It’s been over 6 years since my dad died, but I still remember Kathy. She had a sparkle, but also a sadness. To be in a care home, surrounded by people significantly older than her, with staff who were mostly wonderful but without much time to spend with her (and the time they did spend with her was very much about tasks and functions) didn’t seem like the right environment for Kathy. She needed interaction, occupation (as did everyone!) and to socialise with her peers. 

Without her sister Kathy’s life would have been almost nondescript. Just another learning disability statistic, put into an aged care home that in the local area had a reputation for taking people other care homes wouldn’t take. Kathy’s sister was the person who had filled Kathy’s room with the things she loved, bought the clothes Kathy loved to keep changing into and the foodie treats that brightened up the long days.

Granted, the care home was better than Kathy living in one of the infamous long-stay hospitals, but that is a comparison that only looks favourable because long-stay hospitals really are the lowest dominator in terms of care and support provision for people with a learning disability. Back when my dad was alive I thought that was all Kathy could hope for, then in 2013 I began working with MacIntyre and was introduced to supported living, lifelong learning, person-centred approaches, Great Interactions, and the gold-standard of involving people in their care and support. The rest, as they say, is history.

I wish Kathy had known MacIntyre. I wish every person living with a learning disability, and especially people with LD who are developing dementia, could know MacIntyre. I’ll admit I’m bias; I’ve been heavily involved in their dementia work so of course I’m a huge supporter, but it really is groundbreaking as I wrote about here: ‘Watch And Learn: People With Learning Disabilities Leading The Way’ and here: ‘A Marriage Of Learning Disabilities And Dementia’.

But why does it matter you might wonder? Surely people like Kathy are few and far between? In fact, quite the opposite is true. People with a learning disability are living longer than ever before, but have a greater chance of developing dementia, with the link between Down’s Syndrome and Alzheimer’s Disease that I mentioned earlier being the biggest-known risk factor. Research and knowledge about LD and dementia remains patchy though, in common with so much about how as a society we view the importance of people with learning disabilities within our communities. 

Things are changing and heading in a more positive direction, but it shames us all that statistics like those calculated by the LeDeR (Learning Disabilities Mortality Review) programme tell us that a man with a learning disability dies 23 years younger than men in the general population, and that a woman with a learning disability dies 29 years younger than women in the general population. The median (when collecting data, this is the middle value, obtained from separating the higher half of the data sample from the lower half) age of death for a man with LD is 59 and for a woman is 56.

Those ages of course mean that if a person with a learning disability is going to develop dementia the majority will do so as a younger person, and in addition will likely face barriers in:

• Identifying their dementia (including diagnostic overshadowing, where a person’s dementia symptoms are written off as learning disability ‘behaviours’)
• Receiving a timely diagnosis (including difficulty accessing memory clinics and other specialist dementia services).
• Being offered treatments (including non-pharmacological interventions, like music therapy and life story work, which a person with a learning disability may never experience).
• Accessing age-appropriate, specialised care and support. 

I don’t know what happened to Kathy. My dad left the care home they shared on a cold March night by ambulance with an aspiration pneumonia that he never recovered from. He became a subject of safeguarding, and we went to clear his room shortly afterwards, the last time I saw Kathy. Her health, like my dad’s and everyone else’s, had deteriorated, she’d been hospitalised for bowel blockages and other stomach related issues, was immobile, and much of her spirit and communication abilities had become lost in the constant upheavals that characterised her life. The care home went on to be rated inadequate by CQC and has now closed.

Kathy had a life, but not the life she could or should have had, something far too many people with a learning disability experience. I’ve seen both sides of how we support people with a learning disability and dementia, and my appeal to anyone designing care and support services for our ageing learning disability population is to utalise best practice - it’s out there, shared by MacIntyre and others for all to learn from. It’s replicable, it’s achievable, and most of all it’s inspirational, because if we can get support for a person with a learning disability and dementia right, we can improve how everyone lives with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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*Name changed to protect identity.

**September 2017 saw the launch of the Dementia Action Alliance's (DAA) 'From Seldom Heard to Seen and Heard' Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I'm a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilising my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and people who are living in rural communities in my March 2018 blog.

Living with dementia in a rural community

September 2017 saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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Co-production in health and social care - It really isn't rocket science

Last week was the first ever National Co-production Week, identified on twitter as #CoProWeek. Organised by the Social Care Institute for Excellence, the creation of this awareness raising week marks an important milestone in recognising that if you work in health or social care, it's actually a pretty good idea to listen to, involve and continually work with the people who are using your service(s).

Purely co-incidentally, the start of National Co-production Week also saw the launch of a report I was involved in creating with Carers Trust that looked at the 'Care Act for Carers: One Year On' (PDF). Amongst our recommendations was an explicit remit (on page 23) tasked to one of the pioneer co-production organisations, Think Local Act Personal, to involve carers (people who care, unpaid, for a friend or family member) in services:

"Think Local Act Personal should work with carers to devise and offer training and materials to support practitioners to work with carers to co-design personalised support."

We also reiterate the importance of ‘co-design’ in our 2018 ‘wish list’ (on page 25):

"Social workers and other care practitioners can show that tailored support plans are routinely co-designed and kept under review with carers."

The history of co-production

'Co-design', or 'co-production' may sound like modern day jargon (they are unpopular descriptions with many people I know), but various incarnations of the basic principles of involving people who use services, and their carers and families, in how services are designed, created and run have been around for many years.

If anything, that is my personal disappointment. Through my work I’ve met stalwarts of the 'co-production scene' who have been co-producing for an incredibly long time and yet they feel little has changed on the frontline. In my view, that lack of change isn't a reflection upon those individuals at all, but more about how our health and social care systems respond to those people and the need to challenge the status quo.

Historically, we’ve been far too keen on ‘doing things to people’ rather than truly involving people in their own care and support. We like to tell our fellow citizens how things will work and what will happen to them, being prescriptive and precise, and expecting them just to go along with it. Their own opinions have been seen as irrelevant, perhaps even dangerous, and of course 'professionals know best' anyway. In other words, citizens (patients, service users, carers and whatever other labels you want to affix to ‘Joe Blogs’) should be ‘seen and not heard’.

In June 2012, I wrote a blog entitled ‘How do you make good dementia policy?’. Much of what I talk about in that blog is about co-production, except I didn’t call it co-production then. To me it was just the simple principle of involving people, which I summed up in this quote:

"My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically."

Tokenistic involvement isn’t enough

I have a fundamental belief that within health and social care, there is still an arrogance amongst many leaders to even involve citizens in their work, never mind truly embracing co-production and embedding it within their organisations. Often involvement is tokenistic, piecemeal and descends into glorified talking shops, which are then evaluated poorly and deemed pointless.

Budgets to support true co-production rarely exist, or are extremely limited. Interestingly, these funding arrangements are always decided by people employed by organisations, and I do wonder if being in the safely of a salaried job stifles the desire to engage and create beyond your own job description.

That may sound harsh, but given that in 2012 I was writing about the need to involve people who use services and carers in those services, I simply haven't seen enough innovation to justify a more positive assessment. If we could get to a stage whereby the viability of health and social care services was judged by how well they engaged with the people using their services, and their carers and families, I suspect a rapid improvement would soon follow.

Current, classic examples of organisations not engaging are seen on the conference scene, where too often I still see programmes for events that don't include the voices of experience. From the knowledge I have through my work, I don't believe that enough local authorities co-produce their services with their citizens, nor do NHS trusts or social care providers, and likewise for national government.

And yet, in that 2012 blog post I made the value of lived experience crystal clear when I said:

"The greatest educators are people who have learnt from their own experiences."

Time to change

I am impatient for change, I would freely admit that, and those who are embracing the true principles of co-production don't get enough praise for their work. For everyone else, I come back to this quote from that 2012 blog post:

"If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia."

For dementia, read any condition, any service, any experience. There are always citizens to ask about their health and care, always something to learn from listening to them, and always a way of meaningfully and fully engaging them in how you serve them now and in the future. It really isn't rocket science.

Until next time...

You can follow me on Twitter: @bethyb1886

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Living with dementia as a younger person

In amongst the figures announced recently by the Alzheimer's Society on the scale and cost of dementia in the UK, the data on the numbers of younger people developing dementia was particularly notable. It is estimated that 42,325 people are now living with younger-onset (early-onset) dementia, a number considerably higher than previously thought. Given the problems younger people often have around obtaining a diagnosis it is probably safe to say that the actual figure could be even higher.

Dementia is traditionally associated with older people. That is the prevailing view amongst the general population, and in truth little has been done to dispel it. Occasionally there will be a newspaper or magazine article about an adult under 65 with dementia, and rarer still a child with dementia, but such coverage is often more sensationalist than really educational.

We know that dementia remains stigmatised generally, but if you are a younger person with dementia that stigma is likely to be far more significant. We know too that there aren't enough good quality, personalised and responsive post-diagnostic support services for people who are diagnosed with dementia - again, if you are a younger person that dearth of support is potentially even greater. 

It is well documented that carers of loved ones with dementia generally don't have anywhere near enough support to carry out their caring role. However, that situation can even more acute if your loved one is younger and your family is plunged into a completely different type of crisis around jobs, housing and the care of under-age children. It is also worth noting that dementia in younger people often progresses quicker than for older people. That isn't always the case, and many younger people live well with dementia for many years, but such wellbeing is usually in spite of rather than because of the level of support and care that they are offered from their local health and social care systems.

Issues around the progression of dementia are challenging enough, but adding in the potential requirement for residential care makes the picture even more complex. Many families find it difficult, if not impossible, to source a high quality care home that specialises in caring for younger people who are living with dementia. Mostly the only option is aged care, where a person in their 50's could be living with people in their 80's and 90's with very little in common in terms of hobbies and outlook.

Combine the factors of increased stigma, inadequate post-diagnostic support, challenges for family carers, likely progression of younger-onset dementia, and the lack of specialist residential care together and there is absolutely no doubt that if you are a younger person who is living with dementia you are facing numerous obstacles to living well. Even many of the therapeutic products that have been developed to help individuals who are living with dementia are based on reminiscence of eras that will mean little to younger people.

There are numerous societal pressures too. Because most individuals don't understand that younger people can develop dementia, if you are a younger person with dementia you face being disbelieved when you disclose your diagnosis. You may well become more isolated because friends of the same age cannot comprehend your diagnosis, and if you are working and find that your employment ends you can face huge financial pressures around paying your mortgage etc.

Your local services, if you have any, are generally aimed at older people (be they day centres, singing groups or dementia cafes), although there are some notable exceptions which I will cover at the end of this blog. Vital connections into peer support and international mentoring are often not made at the point of diagnosis, and so isolation is further compounded, added to by difficulties in travelling if your driving licence is taken away.

To say that the UK is badly failing younger people with dementia is something of an understatement. Why this group of people have been ignored for so long is, I suspect, due to that prevailing societal view that dementia only affects older people. If that is the case, then these latest figures should be a big wake-up call to our politicians and policy makers. Whilst specialist services may not be cheap, the cost of providing nothing is far greater, both for the health service and for every single family affected by younger-onset dementia.

Whilst the powers that be mull over that prospect, I couldn’t write a blog post about younger-onset dementia without mentioning some of the inspirational individuals and organisations who are leading the way for younger people with dementia. In their own way each challenges the stigma and discrimination faced by younger people with dementia, and together they form a powerful, collective voice. I hope that through them not only will society learn more about living with dementia generally, but that the particular needs of younger people living with dementia become better understood and more comprehensively addressed.

For anyone who is UK-based, there are a huge amount of resources on the Young Dementia UK website, including a regional breakdown of specialist support services for younger people who are living with dementia: http://www.youngdementiauk.org/support-across-uk. Young Dementia UK also have a list of blogs written by people who are living with younger-onset dementia, including Kate Swaffer and Chris Roberts, two very active campaigners for the rights of younger people who are living with dementia: http://www.youngdementiauk.org/blogs.

Although not exclusively working in the field of younger-onset dementia, I would also recommend checking out Dementia Alliance International, and the work of Norman McNamara, Innovations in Dementia and Dementia Mentors.

Until next time...

You can follow me on Twitter: @bethyb1886

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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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Risk verses reward

I’m not quite sure when it happened, but it seems that wrapping human beings up in cotton wool has become a habit that many individuals and organisations are struggling to get out of. Prime candidates for this approach are anyone who is older and considered to be vulnerable through their health or circumstances. For anyone who falls into this category, the cotton wool approach is likely to become the standard response to ‘caring’ for you.

In the UK, and I’m sure further afield too, we have become very risk adverse. Since just about everything in life has some risk attached to it, it seems that a return to the womb may be the only option to ensure we remain truly safe. With reverse births yet to be pioneered, however, perhaps it is worth proposing an alternative approach – let’s put risk back into living, mainly because life without it really isn’t life at all.

I’m all for ensuring that people with frailties are cared for with due recognition of what is making them more fragile, but risk aversion has gone too far. In many health and care settings, people are expected to remain seated or in bed because of the risk of falls, even though many are capable of being more mobile and would benefit from being so, not least in reducing the instances of pressure sores and infections.

I’ve seen food and drinks left out of reach of people until they are cold, simply because of the risk that these items could prove to be too warm to consume. Personally I am not a fan of cold tea or coffee, so taking this approach with me certainly wouldn’t encourage me to keep hydrated. Doors to the outside are kept locked because of the risks associated with going outside – getting burnt in the sun, catching a chill in the cooler weather or getting wet, despite the fact that sun cream and clothing are readily available to prevent all of these eventualities.

You can take it further too. Banning animal therapy because of the risk of spreading diseases. Avoiding arts and crafts because of the risk that paint or other substances could be ingested. Preventing someone from making their own drink or preparing a simple meal because of the risk that they might burn or cut themselves. Banning gardening in case someone over-stretches themselves with a task, or eats something they shouldn’t. Only allowing people to bath or shower when absolutely necessary because of the risk of them slipping when they are wet and soapy.

The list is endless, the point is that taking away risk means basically condemning someone who has needs, capabilities, wants and desires to a vegetative state that isn’t of their making. I have written previously about the need we all have for a sense of achievement, but this can only come from allowing us some risk in our lives. Letting people do as much as they are able to, and supporting them to excel and potentially push themselves even further, can be frightening but also very rewarding for them and for the professionals caring for them when they do something that they were never considered able to do.

The compromise is to manage risk. You wouldn’t necessarily help someone with a heart condition to go bungee jumping, but you could help them to go outside and sit in a swing in the sunshine. You would be irresponsible to leave a person with advancing dementia alone in a kitchen with numerous safety hazards, but you could be there with them and help them to make themselves tea and toast for breakfast. Indeed many activities that are considered risky can have their risk reduced through supervision and assistance.

Allowing the people we care for and love to have some risk in their life isn’t easy. We want to keep them safe, protecting them from all harm or potential for pain or upset. But it can never be considered good practice to become so risk adverse that you order those in your care to remain seated or in bed, thus condemning them to losing the use of their legs. Many people become more unsteady on their feet in later life, and especially when they are living with dementia, but numerous mobility aids exists to support someone to move around, and certainly in my dad’s case, items like hip protectors were also very helpful.

Sometimes I think care providers lose bravery. Away from their jobs, they can still go and have adventures and try new, exciting and sometimes scary things. It’s easy to forget that those needing their care are no different in wanting that feeling of the wind in their hair, the taste on their lips or the smile that comes from achievement. We hate the idea of losing our own independence, but by become risk adverse in our professional lives, we automatically deny the opportunity to experience the unexpected to those we are charged with caring for.

So next time you see risk, make sure you are also seeing the person. Ask yourself these questions:

1. Are you really protecting the person, or are you actually more concerned about protecting yourself? 
2. Are you guilty of seeing too many situations as risky, when in actual fact the risk is far more minimal than you realise, or could be virtually eliminated? 
3. Can you find a way to enable someone you are supporting to do something that they want to do rather than just dismissing it as too risky?
4. Finally, can you build more proactive risk taking into the daily life of the people you support so that they are actually living and not just waiting to die? 

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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Trouble with the language

How we talk about dementia, and people with dementia, is a thorny issue. It is easy to be accused of being politically correct, or losing sight of the real issues by getting hung up on the language we use to describe them, but whilst I would be the first to admit that there is a fine line between being respectful and pedantic, looking at the way we talk about dementia and people with dementia is important to shaping viewpoints, breaking down stigma and improving dementia care.

That doesn’t mean that I think we should go as far as renaming dementia (see this post on NCD). After all, increased awareness and support for people with cancer didn’t happen because we changed the name, it happened because we changed attitudes and educated society. Dementia is now slowly seeping into the public consciousness, and I don’t think the word itself is a barrier to progress and positivity, but some of the terms associated with dementia are helping to keep the disease in the dark ages.

A snapshot of some of my main bugbears and the reasons I don’t like them are listed below, along with some alternative suggestions. Sadly, all of words I have highlighted here are still regularly used across society, by everyone from media organisations to professionals in health and social care, and even families of people with dementia who don’t understand the disease. Interestingly though, if you read the work of people who are living with dementia and documenting their journey, you won’t see them choosing these descriptions for themselves. Food for thought I think!

Senile is a grossly outdated word that should be abolished from our language.

No one with any ounce of modern thinking uses the term ‘senile dementia’ anymore. It is exceptionally negative, implies that the person is worthless, without any quality of life and unable to make any contribution to society. If anyone had described my father as being senile at any stage of his dementia I would have been outraged.

Senile is also a very age-related term, therefore reinforcing the misconception that dementia is a disease of old age, when it can affect people of all ages, even children, although those cases are rare.

Attach the word ‘senile’ to dementia and it becomes hugely stigmatising, negative and totally inappropriate for the modern understanding of dementia and the care people with it should be receiving. Thankfully, the widespread use of ‘senile’ has been eradicated, and in my opinion any references to it now are archaic.

Service user is a common term in social care, even though turning care into a ‘service’ and a person into a ‘user’ is a concept very far removed from what most families would want for their loved one.

We were completely against this description in relation to my father since it implied a production line approach to running a care home. An establishment where numerous people from different backgrounds live and work together, hopefully in relative harmony, is surely a community, therefore the model of referring to everyone within that building as ‘community members’ brings a sense of warmth, belonging and engenders respect and dignity. A great example of this is the Healthy Living Club @ Lingham Court (http://www.healthylivingclub.org.uk/). People with dementia, their carers and friends are members in this self-directed community group – a refreshing approach that many organisations could learn from.

Client is another widely used word to describe people living in a care home, receiving care in their own home, or taking part in activities run by day centres or community groups.

However, for me it is associated with a transaction approach. You pay money and receive something in return; a bit like visiting a solicitor. Whilst technically this is what happens in many cases, it does nothing to reflect the need for personalisation or compassion that is so vital in dementia care. Again, for ‘client’ how about ‘member’ – it implies teamwork, puts those giving and receiving care on the same level and underpins the need to understand each other.

Toileting is another term that I loathe.

People with dementia should be assisted to use toilet facilities if they need help, but not have such an important aspect of daily life made to sound like a regimented and degrading system. As an example of how strongly I feel about this term, when we were looking for a care home for my father we visited one where the nurse in charge openly told us that they had ‘Toileting Times’ (as I wrote about here). Needless to say dad never set foot in that home, and any other care home adopting such an approach should radically rethink – how would their staff feel if they were ‘toileted’?

Sufferers is a term that has long been used in relation to people with dementia, it appears regularly across the media and infuriates many, myself included, who are campaigning for a better understanding of dementia.

Amongst those who dislike this term the most are people who are living with dementia and sharing their story to help the world understand that they are not looking for sympathy or pity – something that the term ‘sufferer’ implies. They want to be seen as a person in their own right, not as a disease.

I’m all in favour of the drive to bring positivity to dementia care, provide hope and break down stigma. Describing people as ‘living with dementia’ rather than ‘suffering from dementia’ is designed to enforce the point that you can live well with dementia. That is not to imply that there aren’t huge challenges – I would be the first to admit that my father often suffered greatly as a result of his dementia, and indeed the other illnesses that eventually went with it, like pneumonia, UTI’s etc.

However, over the course of his journey with dementia, dad still had far more good days than bad ones. Days when we smiled, laughed, sang, ate and explored the simple things in life together. Days of complete silence and yet pure serenity and calm. Days of endless chatter that either of us really understood but didn’t need to because we had each other’s company.

In all of those moments, my dad was living with dementia and we were living with him, making the best of things and not thinking about suffering. The pleasure we had in each other’s company is something I will always miss.

Until next time...

You can follow me on Twitter: @bethyb1886

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