Posts tagged ‘dementia’

January 11, 2013

Moving On and Looking Back

Forgive me for the slightly self-absorbed post. Blogging by its nature can be the epitome of self-absorption but I attempted to write with a look to the wider world, particularly in the sector I know best, social care. I put this in the past tense as this will be the last post I write.

When I started writing, I had the voice of a social worker and AMHP (Approved Mental Health Professional) in a Community Mental Health Team. I was trying find that voice amid the policy and processes that we found ourselves, as practitioners, caught up in and trying to extend outward some of the frustrations and observations garnered from the ‘frontline’. It felt and it feels like that policy happens from afar, away from the homes I visited, the wards we attended, this was my world and it felt like a completely different world from the one defined by officials in the Department of Health when they remember ‘social care’ is a part of their remit.

I believe wholeheartedly in social work as a profession and social workers as professionals but I became frustrated at the lack of professional leadership. There is no doubt that the last year of my professional life has been one of the most challenging. I’ve worked in social care for 20 years (gulp – I look younger, I promise!) as anyone can imagine, I’ve seen many changes in that time. ‘Reconfigurations’ were nothing new to me. Working with change and in organisations that change frequently is one of my fortes but the most recent one was the most painful by far. While parts of my job, I loved – particularly when I was able to work with and alongside individuals and families and walk with them through some of those moments of crisis – working in an organisation and delivering services which were being ripped to pieces was difficult. Defending organisational decisions became impossible. The fight was still there inside me to promote and present a better way of working and honest interactions with everyone who needed our service, I saw waiting lists grow and discharges of people who I felt would benefit from more support. I saw the effect of the programme of cuts in the NHS in a very visceral way. I was and am very lucky. I have been able to walk away. I find myself in a job that excites and interests me and presents many new challenges. The same ease with which one can move on cannot be said for those who are reliant on the support of social care services and I remain acutely aware of my privilege in being able to.

I found a different (but related) job and thought I’d be able to continue writing with the passion I never stopped having but I can’t. The situation has changed and the voices need to be heard from the frontline I’ve stepped back from. I have become the person I resented for so many years. As a social worker, I always had a hint of scorn for those who took the ‘desk jobs’ and moved away from the direct work with people who use the services we provide but I’ve become one of those people.

In defending myself to the old me, I’d say that changing the world can happen in different ways. I am no less committed to the same ethical standards of making the world of health and social care better for those who use services. I am seeing that social work and social care happens in many different places. Is it an attempt at justifying my decision to leave social work behind? Yes, probably but that’s something I’m reflecting on a great deal at the moment.

I have been disillusioned by the time I spent working in the statutory sector as a social worker. As a parting salvo as I head off into the sunset, I want to reflect on a couple of themes that revolve around social care at the moment.

Kneejerk funding decisions lead to more expense, both in terms of quality of life and finance in the longer term. I’ve seen panic cuts both at a national and local level. The problem with panic cuts is that the things that are easily destroyed cannot be built back up in the ‘good times’.

‘Choice and control’ the buzzwords of change ring very hollow to me now as I saw in both the NHS and the local authority, the way that data and information is manipulated to meet performance targets that are meaningless to people who use services. Choice is one of the most nefarious words in the sector in my opinion. ‘Choice’ is very much defined by what organisations allow to be chosen and the confidence, communication skills, advocacy support of the individual doing the ‘choosing’. I railed against processes that favoured ‘he who shouts the loudest’ but it was to no avail. Presented by the government as a panacea of positivity, I have seen the downside of ‘choice’. It has been the creation of a two-tier service in adult social care that provides those who are able to choose with fantastic opportunities but those who may not have the capacity/support to choose are left lagging behind, in poorer, oft forgotten services. With funding drying up and fewer third sector organisations able to pick up the slack, there is a massive void of support which often falls on family and friends – the ‘informal’ support networks that the government still feel able to criticise.

Dementia care is a particular interest of mine. Professionally I have worked in the area for a number of years. Dementia is moving further forward in terms of government policy making and the so-called ‘dementia challenge’ which is currently trying to increase diagnosis rates. That’s all well and good and I won’t enter that conversation but I will say this. In order for dementia to be better understood by the public it has to be better understood by the government agencies who are supposed to be providing the information. There is a horrendous lack of information about the role that supportive social care services play in improving the quality of life for people with dementia. As I worked alongside a ‘memory clinic’ which had been decimated by cuts, I laughed hollowly at the words of the government ministers about increasing diagnosis rates in primary care and for hospital inpatients. See my first point about panic cuts and lack of cohesion. Reading some of the Department of Health missives you’d be at a loss to think they ever discussed any of their plans with anyone with a current social care background. Perhaps the new Chief Social Worker (or one of them anyway) will provide a sticking plaster to this but it’s very apparent at the moment that there is no cohesive, current social care voice in the government department and it makes some of their policies woeful. The level of ignorance even of government ministers who clearly haven’t been briefed by people who understand social care would be embarrassing if it weren’t desperately sad.

Lastly about Social Work itself. I retain my social work registration and will now until 2014 at the very least. I suspect far beyond that as I don’t want to give up my registration. I am very proud to be and to have been a social worker. The ethics and values of the profession can really shine a light and guide many of our colleagues in allied professions and we shouldn’t be shy of realising our own worth. Often I hear social workers talk of status and comparing ourselves unfavourably to nurses, teachers, doctors, psychologists etc. We shouldn’t need to constantly compare. We have a fine profession with its own knowledge base, standards and codes. Having worked in a multi-disciplinary mental health team (and I think being an AMHP helped with this as we are known to be a stubborn and independently minded bunch) I never felt anything but an equal to the other professionals I worked alongside (and challenged – psychiatrists – I’m talking to you ;)). We do need to ‘sell ourselves’ more and we can’t rely on waiting for ‘good press coverage’. Do the job, however hard, with the ethics and values at the heart and remember why we are there – it isn’t to promote organisational will but to walk alongside and guide. Sometimes there are difficult, coercive decisions to be made but reference to values and ethics become all the more important there. The nature of a job that sometimes has a coercive function is that ‘hearts and minds’ will never be particularly straightforward. I didn’t become a social worker to make friends or to swan in adulation of my ‘goodness’. I went into it because I felt it gave me more opportunities to make a positive difference in someone’s life. More often than not, certainly over the last couple of years, it became more about saying what wasn’t possible than what was – but if I could deliver that with as much humanity and empathy and transparency as possible, it could be a start.

Many thanks to Zarathustra for this space and for the support he has offered to me.

And thanks to everyone for reading, commenting and responding over the last year or so. My reasons for stopping are work-related but not in a bad way. I just think my voice has changed now and it’s important that those ‘on the ground’ have the way left open to them to find it. I won’t say I’ll never write again, I may at some point in the future, but if I do it won’t be anonymously I will, though continue to knock around on Twitter I expect!

Goodbye

November 8, 2012

Dementia Friends

The Department of Health has, today, launched the Dementia Friends scheme.

It’s a lovely scheme to promote greater awareness of Dementia by recruiting an army of  volunteers. These volunteers will be trained to have an ‘understanding of dementia’  As the website itself says, if you become a ‘Dementia Friend’

We’ll equip you with an understanding of dementia and how you can help, and the rest is down to you. We want Dementia Friends in every community – in every hospital ward, post office, place of worship, and on every street. Our target is to reach a million people by 2015, and we’re confident we’ll not only meet this target but will beat it

Wow, that’s great. Really it is. I’m (for once) not being sarcastic. I work with a lot of people with dementia and having to explain it to them and their family members, I see the fear and lack of understanding and I wish that there were a greater knowledge in dementia in the community and this seems to fit the bill.  In my social work training course, over two years, I had one lecture on older people – I can’t even remember if dementia was mentioned. That’s plain wrong. It needs to be a meaningful part of every training programme and on many courses.

First I thought Dementia Friends would be like a massive new befriending scheme for isolated people without family and friends and excluded by community  as the site says

Alzheimer’s Society research found that nearly two thirds of people with dementia feel lonely, and almost half reported losing friends following their diagnosis. With one in three people over 65 developing dementia, it’s vital we change this picture.

But reading more I see its  about encouraging people who are Dementia Friends not to abandon those of their family, friends and social circles who have dementia and  not to ‘drop’ them as the illness progresses. Which is also a very good goal.

I guess I just see a disproportionate amount of people who don’t have family/friends/social networks or maybe I’m seeing them after their networks have abandoned them.

Early Diagnosis

One of the aims of this scheme is apparently to encourage earlier diagnosis of dementia. Again, a very laudable aim. The Guardian previews Cameron’s announcement

Cameron will say: “Through the Dementia Friends project, we will for the first time make sure a million people know how to spot those telltale signs and provide support. There is still a long way to go in fighting the disease, but together we can improve the lives of millions.”

The scheme will provide free coaching sessions on how to spot the signs of dementia and provide support to people with the condition.

Each Friend will be awarded a special “Forget-me-Not” badge once they have completed their training, so that they can be easily identified as being able to assist people with dementia.

So when the dementia (and remember there are lots of causes for forgetfulness and confusion other than ‘dementia’)  is ‘spotted’, I imagine the hope is that the Dementia Friend will encourage the person they have potentially ‘spotted’ to get screened.

All good. Again back to the Guardian which says

The rate of successful diagnosis is expected to double from 42% at present to 80% – a target set by Cameron earlier this year when he launched his challenge.

Healthcare professionals will also be required to ask all patients aged between 65 and 74 about their memory as part of their standard health check. Simple diagnostic tests will be expected to be done on site, cutting waits that at present can be as long as 18 months.

Post Diagnosis Support

So we are able to identify and diagnose dementia earlier. Really that’s great. It allows people to have more time to adjust and to make plans regarding their needs in the future. We have more people who are aware of the needs of people with dementia in their own social circles and prepared, we hope, to be more tolerant and supportive.

However we can’t allow the happy clappy Department of Health talk to get away with the fact that dementia services and provisions have been slashed to bare bones. There is little left to provide to people who have early diagnoses, particularly if they don’t have that family support because the resources just are not there.

I’m all for early diagnosis if people want that (and not everyone does but that’s an individual thing) but if this is the same government that has launched a savage attack on local authority social care services which were barely fit for purpose at the best of times then I can’t help but be cynical about some of these provisions.

I’d like to see more research and provision of different types of care both in residential settings and at home so we aren’t at the mercy of large private companies creating ever larger residential and nursing homes in suburbs where the cost of property is low that house up to 80+ residents with dementia in places that are difficult for family to access without cars.

I’d like to see some of this ‘dementia challenge’ money put into allowing local authority assessments to build cost of non-directed advocacy into support planning – that would make an immediate change in the quality of life of those with dementia.

I’d like to see some honesty around the poor quality care for people with dementia currently in social care and hospital settings. Maybe some of that money could be invested in paying care staff better and more importantly improving training.

Big Society

This is very much a ‘big society’ volunteer type role. Good luck for those who participate. I’ll likely join up myself but lets not forget that this means distribution of volunteers may not be equal and those who have no community as such will not have the same benefit of access to these who volunteer.

So a good initiative and well done but lets not forget that if the government aim is to increase diagnosis, they have to be prepared to put more money into improving what happens and what support is available after diagnosis.

October 24, 2012

A Culture of Care?

I can’t help it but I’m somewhat unimpressed and uninspired by claims that Castlebeck’s transformation is nearly complete (As reported by The Guardian).  I’m sure Mr Sullivan has done a sterling job in dragging the remains of homes such as Winterbourne View towards acceptable standards but the very fact that such poor standards of care are evident in contemporary care is a shameful indictment on our society.

It riles me not only that such abuse took place in the first instance, but that it wasn’t picked up by the care provider.  Would the abuse still be happening if it were down to Castlebeck to identify it and take action?  I shudder to think that the answer might be a resounding “Yes”.  Also to think what else may be happening within care homes across the UK where vulnerable adults don’t have the benefit of family involvement or carers with the insight to blow the whistle on abuse … or Panorama!

 Having worked with numerous residential and nursing homes, it is not hard to see how totally dependant some vulnerable members of our society are on those paid to provide good quality care:  Care that is monitored and regulated and where safeguarding policies are in place to ensure that those who can’t speak up for themselves are protected from abuse… Really?

I can’t help but recalling one particular home, the manager was sitting in a very well equipped, spacious office when I arrived congratulating herself at the marvel that were her new, glossy brochures. Showing prospective families just exactly how decent the home was with its ample garden blooming with flowers and general good cheer.  Carers smiled on the front cover in a manner that exuded quality, person-centred care from more carers than one could possibly need whilst care-free residents tucked into their gormet meals.

Sadly, the reality was very different:  Insufficiently trained carers that didn’t have the time to answer a call-bell that had been rung for the umpteenth time as the room’s occupant continued to lie in urine soaked sheets.  Then there was the missed opportunity after missed opportunity to spot pressure wounds that were silently getting progressively worse – out of sight, out of mind.  All the time, the owner continued to congratulate herself and confidently sell the homes’ services to prospective new residents and their families.  Oblivious to the reality that was unravelling the other side of her plush office door.

Of course, such business’ need to be well run but when business comes before quality of care something needs to change.  Whole cultures need to change because if the underlying ethos of a home’s manager is developing a thriving business, how can the ethos of carers within that home be anything different … such as caring perhaps.  Whilst I’m all for serious case reviews and learning from past mistakes, I’m not convinced my ministers’ exclamations that, “We must learn from this so that these things must never happen again!”   I fear that they will happen again … and again until the whole culture of care changes to one of … well, care.

I can recall perhaps just a handful of small care homes where the managers rota themselves on shift so they know what’s going on and can identify any training needs.  Where more money is spent on care than on prtraying a good image to prospective new residents.  They may not be glistening with a new coat of paint every 6 months or benefit from TV advertising but they are run with an underlying ethos of care and respect and reflect far more the brochures that are displayed elsewhere, but they don’t have their own glossy brochures.  All they have is a good reputation which gets them by more than adequately.

October 18, 2012

What I would say to Norman Lamb

Norman Lamb MP

Working in dementia services at the ‘frontline’ I often consider what messages I’d feed back to the local and national policy makers if I ever had the opportunity. Of course, I don’t have these opportunities as I’m not a manager so I thought I’d imagine I were at an important meeting with Norman Lamb, the minister for Care Services.

This is what I’d say.

Make policy practical. Making the right noises about setting up a wonderful plan to ‘challenge’ dementia is all well and good but I see nothing of that at the ‘frontline’.

What I see are cuts. I see respite narrowing in terms of ability to access. I see provisions which had been helpful, closing. I see a lack of beds in the local hospitals when they are needed and I see people who need support being denied it because there are no provisions left.

So take your pleasantries and policy ideas and come and spend a day with me in the community and you’ll see why I am impatient and unbelieving about the platitudes that emerge from those who don’t seem to understand what is happening ‘out there’.

I’m tired. I’m tired of saying ‘no’ to people whom I see need services because the provisions are so tight. I’m tired of saying ‘no’ to people at the early stages of need when I know it will prevent higher costs in terms of pain and suffering but also in terms of money in the longer run. I’m tired of logging targets that have no meaning in the lives of those whom I work with. I’m tired of jumping through artificial targets so I can ‘prove’ I’m doing my job when neglecting visits to actually talk to people because I have to catch up on the paperwork.

I have waited for years for a fair system of implementing personalised responses to care which include people with dementia but am still waiting because the entire focus on the programmes developed through personalisation have been on those who are more able to be involved in the processes or those who have involved family members to help them. I’m tired of wading through appallingly designed forms, self assessments and RAS (resource allocation systems) that focus entirely on physical health needs and marginalise mental health needs thereby ignoring equality legislation.

I want action and yes, sometimes, action includes money. I know what the people I work with ask for and I know I can’t deliver it – not through a lack of will – I want to be able to go home thinking I’m doing a good job and doing my best – and for the most part, I think I do – but the best I can offer is very sparse. The best i can do isn’t good enough.

We have few residential homes locally and are placing people further from their families. We have nothing ‘creative’ left to offer as those agencies which are helping with ‘support planning’ aren’t trained to offer support in non-directed advocacy and therefore if someone doesn’t ask, they don’t get.

So what would I do? I don’t have a budget and it’s probably for the best as I’d steam through it in five minutes – one of the many reasons I’m not and will never be a manager – but I would focus on trying to create a system of social care which offers equality of access to good and creative support planning.

I’d commission more non-directed advocacy into support planning. I’d roll out Individual Service Funds for people with dementia and I’d allow more time for carers – and for social workers to work with people who have dementia because honestly, that’s what’s needed.

However all we get is platitudes about how wonderful services will be without extra money being provided. Yes, I’m sure early diagnosis is important. It is. But please, please can the Department of Health and local government concentrate their minds on what is happening now and the poor services we are providing now and do something, anything to make them better.

I want to do my job well and I want to support people but all the tools I had available for doing so are being ripped away from me. It’s sometimes hard to keep the motivation up when you don’t believe you are helping anymore.

I’m the person saying ‘no’. Me, not the Head of Adult Services, not the Ministers responsible, not the councillors responsible. I sit in people’s homes and tell them what they are not entitled to anymore. I want those who make these decisions to take responsibility for that and to listen to us who go out there and who see.

That’s what I’d like.

picture by Liberal Democrats at Flickr

September 21, 2012

World Alzheimer’s Day 2012

Purple

Today, September 21st 2012 is World Alzheimer’s Day. The purpose of World Alzheimer’s Day is to raise awareness particularly of Alzheimer’s which the more common type of dementia.

I have a particular interest in Alzheimer’s and dementia. I think there can be a drive in policy to both marginalise those who have dementias and to increase the pressures on their families (where they have involved families) particularly as the amount of money in the ‘pot’ to deliver social care is reduced.

In the light of drugs companies announcing that they may be cutting back on investment in dementia research, it becomes more important to ensure that awareness of the needs of those with or who may in the future have a dementia remain at the forefront of the agenda of health services.

I think it’s important that amid the distress that an illness causes, we remember that a diagnosis of a dementia is not a sentence to misery. It is important that the quality of life factor is researched as well and that we don’t focus on the ‘misery’ of dementias as forgetting and losing the ability to remember is a very frightening thing.

Dementia still carries a stigma. I know the government refers to a ‘dementia challenge’ – subtitled ‘Fighting back against dementia’  but generally  I like to think of it as an opportunity to think about the way that society responds in different way. What are we fighting? Shouldn’t we be working with and walking alongside dementia?  We talk about an ‘ageing population’ and a ‘tsunami of people with dementia’ with an inherent negativity. While most dementias are not reversible, it’s importance that the tenets of ‘recovery’ are not lost in terms of losing hope around a person and promoting a more positive quality of life and environment for those with dementia and for their families where they have them.

By referring to a ‘dementia challenge’ and framing dementia as ‘one of the greatest challenges we face’ I worry that we remove the responsibility of society to promote a less stigmatising environment around people with dementia. It’s that social model of mental health again. Often dementias are forgotten by traditional mental health organisations because there are some differences but I’d like to see a lot of the developments in terms of user voice in mental health extended to dementia services and particularly towards users as well as carers as there is a propensity,  particularly in older adults services to assume  that the user and carer voice will be one and the same and can be interchangeable. I’ve been working in services long enough to know the importance of capturing user voice separately from carer voice and think that ‘lazy’ engagement is much easier than engagement which seeks out those who may have more difficulty communicating.

We need to ally Alzheimer’s and dementias with hopes and a focus on the person and not the illness. Not all dementias, nor all Alzheimer’s are experienced in the same way and the importance is the ability of services – as with all mental illness – to respond to the person and not to the diagnosis.

In my work it is one of the things I find most frequently – people (professionals who really should know better) make an assumption about someone with a dementia diagnosis – about what they can and can’t do/want/achieve. I want the stigma with the NHS and from adult social care to be challenged – that’s my ‘dementia challenge’ if I must use the government’s language.

I want the challenge to be held to statutory services. I want the challenge to be picked up by the NHS and Adult Social Care. I want funding to be appropriately focused to promote better quality of life for those with dementia. I want people with dementias to have a better say in their own services. I want residential, nursing, home and hospital care for people with dementias to be so good we don’t have to worry about it and we can have a confidence that services will be delivered which will help and not hinder personalities to be nurtured when the memory fades. We can deliver better services but the services have to be flexible enough at their core to accept and respond to different ways of doing things. That’s the failing of the system so far. There is a external fascia of ‘personalisation’ but the core of the services, commissioning and attitudes have not changed.

Social Care services for older adults have been struggling far behind, in terms of funding, those adults of working age. There needs to be a greater push on these discriminatory systems which act against people who have dementias and the government can solve it’s own ‘challenge’ by focusing on these issues.

We can make things better but the stigma of those who have dementia needs to be acknowledged by the public but also by the government, by the institutions of state that are responsible for the delivery of services, academic courses which train health and social care workers need to promote ageing positively rather than as a series of ‘problems’ and we all need to look for opportunities rather than ‘challenges’ of Alzheimer’s, dementia and old age.

Some good resources to read about Alzheimer’s and dementia

Modules from OpenLearn (Open University – free modules)

Fisher Center for Alzheimer’s Research Foundation

Alzheimer’s Society UK

SCIE Dementia Gateway

Dementia Resources – NHS Health Scotland

Register an interest in participating in research into Alzheimer’s (for those who have Alzheimer’s and carers) – via DeNDron

photo by Allie’s Dad @ Flickr

May 21, 2012

Dementia Awareness Week – My Wish List for Health and Social Care Professionals

Today is the start of Dementia Awareness Week. The Alzheimer’s Society are running a campaign ‘Remember the Person’ which is a good byline, if only it could be remembered.

my father enjoys the art at the nursing home

In the wave of headlines talking of ‘dementia timebombs’ and ‘care crises’ its unsurprising that the presentation of ageing and dementias (although important to note that dementia is not a part of the ‘natural’ ageing process) is seen in negative lights and that ‘remembering the person’ is often the last thing that happens.

This is important generally, but it is particularly important in health and social care settings when all too often systems have been commissioned and organised for people who do not have dementia – and services are not making allowances for the additional time and skill needed to be able to give people who have dementias the dignity of improved communication and facilitated communication.

While the Alzheimer’s Society concentrates on the ‘Remember the person’ in day to day life, I’d like to add my own ‘wish list’ to their campaign in terms of health and social care professionals, managers and commissioners and add a few pleas.

 

-Remember that caring for someone with a dementia, whether at home,  in hospital or in a residential setting, requires particular skills and commission appropriately. Time for training for staff and space and time to promote communication has to be built into commissioning costs. This cannot be done in 15 minute slots. It cannot be done by agencies that do not offer consistency of care. This is detrimental to the individual who is cared for and the family around them.

 

- Remember to support the family and friends of those who care for people with dementia. Do not punish a family financially and through pulling back support because you are relying on their family because the more pressure that is put on family carers without support, the greater the costs in terms of longer term ill health and distress. Support doesn’t always have to have a high financial cost. It can be about support in other ways and linking in with carers services. They are there for a reason.

 

But

 

-Remember that not everyone who has dementia has family or friends around to advocate for them or support them. When you roll out programmes like ‘personalisation’ and automatically assume that everyone wants ‘direct payments’ and deliver two tier qualities of service, they may (and currently do)  exclude those who may not be able to manage the direct payments themselves and who don’t have family to advocate for them. There is an imperative to bring the voice of people who lack capacity to the agenda of ‘choice’. My own solution would be to build in the requirement for independent advocacy into the processes and into the budgets. We must demand better in terms of personal care delivery for all, but especially those who cannot or do not feel able to (due to power imbalances) speak up for themselves.

 

- Remember that the person who is being cared for is not one of ‘the elderly’. They are a person and an individual  who has loved and who has been loved. They are a person with aims, ambitions and goals. They might not be able to express them as well as in the past but having memory problems does not mean that someone necessary lacks capacity or communication skills – it can though, take more time – regard humanity as having worth. When we have to make decisions on behalf of others, remember to treat everyone as you would want to be treated but remember not everyone wants what you would want.

 

- Remember not to dismiss or diminish those who have dementia. While, depending on the type of dementia ‘recovery’ can mean different things, what it absolutely does mean is not giving up hope and building on the strengths of those around. We have to think about living positively with dementia. Too often within social care and health services, I have seen other services discriminate against people with dementias and older people because they make assumptions which are dismissive. We should never make assumptions and never extinguish the hope of facilitating a better quality of life which build of the strengths of individuals. Never.

 

Let’s hope that Dementia Awareness Week is successful and makes providers and commissioners dwell on the need for awareness of the issues of dementia, as well as the ‘general public’.

photo by Susan NYC Flickr

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March 26, 2012

Researching and Improving Dementia Services

Memory

Today the government has announced an increase in funding for dementia research, indeed, the figures given by the BBC talks about raising the money put into dementia research from £26.6m to £66.6m by 2015.

Great news, really it is. I think it’s essential that there is a focus on dementia and what can prevent and assist those who suffer from and potentially suffer from dementia in the future.

As well as research though there were other strands to the government’s announcements about dementia.

Mr Cameron will set out plans to step up research into cures and treatments and to ensure that the health and social care systems are equipped to deal with the problem.

The highlighted part is the area that sticks a little in my throat as I read it. I do wonder how much the government and ministers are aware of the services that have been decimated (probably more than decimated if we are going to be talking literally) over the last couple of years and the disinterest shown by the general public in terms of improving both health and social care outcomes for those who have dementias.

Money into research and cure is a hopeful statement  – it looks forward and it helps us who are the electors of today have more hope for our future with the fear of losing cognitive functioning in our later (or not so later) years.

Money into equipping health and social care systems to ‘deal with the problem’ of dementia are altogether something else because it isn’t ‘us’ who will benefit – we, todays electors, are the ones who will pay and experience (or at least, the lack of political will on all sides)  shows that no-one wants to pay for the true costs of providing good quality care for older people with dementia in real terms.

I’ve seen a lot of simplistic talk about dementia over the past weeks, months, years. It is not a single diagnosis and it does not affect people in a single way. People with dementia walk and function among us and they are not all older people sitting alone in bungalows waiting for pity – although it’s important to remember that some do live alone without sufficient support or interaction. They are not all people who want or need pity – there is hope for positive life experiences even when ones cognitive functioning is impaired.  We infantilise the process of ageing and those who merely have a diagnosis of dementia and it says far more about those who are speaking and talking in those terms that those who may be bearing the progress of their diagnoses in as many different ways as there are people.

However one thing does need to be addressed and I hope it is addressed by the government today – with money. That is the issue of treatment and assumptions made about people with dementias in institutional care settings. We have had talk about ‘dignity in care’  – particularly in hospital and residential care. This must be approached and tackled in the ways I have previously discussed by putting more people on the ground in terms of nurses in hospitals and increasing staffing levels in residential and nursing homes. We need to back up a determination to provide better care for some of those people who won’t be ‘shouting loudly’ or have families to ‘shout’ for them by placing independent visitors and advocates in these institutional settings and improving regulation and quality control for those who need these services.

As for changes in home care – we need to embrace truly personalised care and the ‘personalisation’ agenda beyond managed budgets of block contract agencies providing 15 min ‘spot checks’ to put a microwave meal in the oven for older adults with dementia in their home. This is not dignified and it is not cost effective. Over time, putting more good quality and accessible care into people’s homes will keep people out of residential and hospital settings over the longer term but it will cost.

So I hope these announcements the government makes will look at quality of care and will look at funding of care over the long term for people with dementias who live both in the community and in residential settings.

I hope to see, alongside better funding for research

1) Better support for family/friends as carers

2) Proposals to make personal budgets work well and for different support to be used for those who are not able to engage in the process of choice themselves either because they don’t wish to or don’t have the mental capacity (or family) to do so.

3) More thought put into the funding mechanisms of care for people with dementia both at home and in residential settings. Dilnot or not Dilnot. I’m not in agreement with all the tenets of Dilnot (I’d favour the so-called ‘death tax’ to be honest) but its better than that awful hotch-potch that we have now and what we can’t afford is to allow things to continue and to leave matters up to different local authorities to manage in their own different ways and at different levels.

4) Better non-directed advocacy with muscle for those who don’t have family/friends/community around them (by non-directed advocacy, I mean advocates who specialise and are trained in working with people who may lack mental capacity to ‘direct’ or instruct their advocates)

5) Robust regulation of dementia nursing and residential homes and wards in hospital with random spot checks and high standards.

I’ll be back tomorrow and see how the government does on this announcement.

One day though, I’d like to see a government of any political flavour that truly does look at national interest and not political expediency in terms of policy making.

The triumph of hope over experience.

photo by Ruth Flickr

February 27, 2012

The case of the nurses and the elderly man: does JE stand for judicial empathy?

The case in the Court of Appeal of two nurses dismissed for their role in the unlawful restraint of a patient with dementia seems an interesting case study in judicial empathy. Its citation is Crawford & Anor v Suffolk Mental Health Partnership NHS Trust [2012] EWCA Civ 138 (17 February 2012), but I’m going to call it the case of JE. Although he’s not a party to the case, he is the person it’s all about, after all.

At the least, there was palpable sympathy from the court for the nurses. And very useful judicial commentary for any professional who faces routine suspension and isolation during a slow disciplinary investigation.

Try out empathy for the nurses yourself. Here’s the crude facts:

  • You are one of 2 nurses on night duty on an admission and assessment ward primarily for people with depression, anxiety or dementia;
  • On this particular night, one of the patients, JE “was 87 and suffered from dementia. On the day in question he had been agitated, aggressive, hitting things, spitting, swearing, throwing drinks, kicking and punching, and generally requiring particularly close attention. It was noted that the safe handling technique used by the staff on the previous shift had caused skin tears on his arms to be opened. Medication had to be administered forcibly because he was refusing both food and medicine”;
  • You have a duty of care to all the patents, and are aware that on the previous day, JE required 2:1 attention, with the effect that “the other patients had only their basic needs attended to”;
  • You constrain JE by tying his chair to the table with a sheet. Exactly how, and whether it involved tying JE himself, is unclear;
  • In consequence you are suspended, and forbidden all contact with colleagues;
  • The incident is reported to the Police;
  • Eventually, following a disciplinary, you are dismissed, and inevitably your regulator is aware of this.

So, do you feel hard done by? Really, your employer just hadn’t provided enough staff to manage the situation in accordance with best practice, and some sort of hack was going to be necessary. What you did – or possibly, what you failed to record or prevent – wasn’t noticeably worse than the injuries the day staff caused to JE’s arms, and the forcible administration of medication, both of which are also technically assaults. Inevitably, best practice care for him would have been to the detriment of all the other patients. And after an incident-free career, it feels over the top to face immediate suspension with no contact with colleagues. Is it really right that you whole career should be at risk?

The Court of Appeal got all of this, and went out of their way – really, bending over backwards – to criticize the nurses treatment.

First, the footnote

The footnote is frankly the best bit of the judgement. A shame it is what lawyers would term an obiter dictum – unnecessary to the decision, therefore not binding on anyone else. The judges noted what in my experience of such cases is true, that this immediate suspension with no contact is common practice, but, they said, it is not good employment practice:

“It should not be a knee jerk reaction, and it will be a breach of the duty of trust and confidence towards the employee if it is. I appreciate that suspension is often said to be in the employee’s best interests; but many employees would question that, and in my view they would often be right to do so… I do, however, find it difficult to believe that the relevant body could have thought that there was any real risk of treatment of this kind being repeated, given that it had resulted in these charges. Moreover, I would expect the committee to have paid close attention to the unblemished service of the relevant staff when assessing future risk.” [paragraph 71]

The footnote is even more scathing about the referral to the Police:

“I confess that I do find it little short of astonishing that it could ever have been thought appropriate to refer this matter to the police. In my view it almost defies belief that anyone who gave proper consideration to all the circumstances of this case could have thought that they were under any obligation to take that step. I recognise that it is important that hospitals in this situation must be seen to be acting transparently and not concealing wrongdoing; but they also owe duties to their long serving staff, and defensive management responses which focus solely on their own interests do them little credit. Being under the cloud of possible criminal proceedings is a very heavy burden for an employee to face. Employers should not subject employees to that burden without the most careful consideration and a genuine and reasonable belief that the case, if established, might justify the epithet “criminal” being applied to the employee’s conduct.” [paragraph 73]

This approach to criminality is fascinating. There was an assault. And in my assessment it is hardly beyond the bounds of probability there was a crime. But the judges do not say there was no crime. They apply a different test, whether the conduct justifies the epithet ‘criminal’ being applied to it. One gets the impression the court is mindful that the criminal law is there to sanction the most egrerious breaches of society’s minimum standards, and feels that regulated professionals who fall short of best practice standards are properly dealt with in a different arena than the criminal courts. Moreover, employers of professionals should be making the judgement about the appropriate arena for themselves.

Second, the speculation

Yes, I’ve gone for alliteration.

The court imagines for itself how the nurses must feel:

“They will frequently feel belittled and demoralised by the total exclusion from work and the enforced removal from their work colleagues, many of whom will be friends. This can be psychologically very damaging… It would be an interesting piece of social research to discover to what extent those conducting disciplinary hearings subconsciously start from the assumption that the employee suspended in this way is guilty and look for evidence to confirm it.”

The court also speculates on the long term consequences:

“Even if they are subsequently cleared of the charges, the suspicions are likely to linger, not least I suspect because the suspension appears to add credence to them.”

Third, the theorising

The third way the court bent over backwards was in its reasoning to its conclusion. The structure of employment law in the area of unfair dismissal is unhelpful to us professionals, in that the appeal process does not consider whether the decision could or should have been different, only whether it was within the range of reasonable responses based on honestly held reasonable belief – see paragraph 25.

Given how low the threshold for what the employer needed to show, it required quite tortuous reasoning for the Court of Appeal to swap the outcome again and declare the dismissal unfair. But the court managed it.

But what about JE?

However useful the judicial comment on the treatment of professionals by employers – and I truly welcome its comments, as the standard ‘act first, reflect later’ practice of risk-averse employers can treat professionals quite abominably – the elephant in the room so far as judicial empathy is concerned is the patient concerned, JE.

I see no evidence that the court tried to put itself into JE’s situation. It observed that the medics were

“sanguine about it. It appeared to cause them little concern; [the Ward Manager] noted that they were not “shocked, angry or even mildly emotional about the allegation”. She felt that they were not treating the incident seriously enough.” [paragraph 7]

The court, frankly, seems equally sanguine.

“…technically tying JE to the chair was an assault, with the implication that this is a grave matter. But so is it an assault when nurses physically restrain a patient, or compel him to wear a mask when he is spitting at people, as happened with JE. There was obvious justification for restraining this patient, even if the appropriate procedures for doing so were not employed…” [paragraph 73]

But I find it hard to be so sanguine. JE was male, aggressive, 87 and suffering with dementia, but a human being nonetheless. None of these characteristics could, of themselves, have provided the justification for his treatment. And I really do wonder whether the reaction would have been the same had he been a passive young woman with a physical disability, rather than an aggressive old man with dementia?

JE maybe does not stand for judicial empathy after all?

Allan Norman is a registered social worker and a solicitor at Celtic Knot.

January 20, 2012

Direct Payments, Fraud and Safeguarding

Yesterday, I was engaged in a (very brief) discussion on Twitter about this article in the Guardian on Wednesday which highlights a case where direct payments were used fraudulently with tragic consequences.

The thrust of the discussion was that while there will always be isolated incidences of potential abuse and criminal actions, highlighting the method of delivery of the service (through direct payments) was unhelpful at best when there is so much abuse in the delivery of ‘standard’ care packages especially with the follow up article here about ‘how to prevent fraud in direct payments’ which itself states that

There is as yet no evidence that having more people on personal budgets in Enfield has increased the amount of fraud. In fact, of all the fraud cases identified in the area in the past year, only one was related to personal budgets.

Having been involved in the provision and delivery of direct payments since they were first established (Community Care (Direct Payments) Act 1996)   I’ve never personally  come across an instance of them being misused intentionally.

My gut feeling is that the man in the first article who was killed by his son – after receiving a direct payment for a couple of years – may not have experienced a different outcome if the means of delivery of the care had been different.

January 3, 2012

Creating Solutions in Care for Older Adults

We’ve seen a lot of discussion over the past week or so about the ‘problems’ created by older people who sometimes remain in hospital when there are no appropriate and suitable services in the community to assist in their rehabilitation goal – which is callously referred to in policy-making ivory towers as ‘bed blocking’ – a term I’m wholly opposed to.

Last week, Mike Farrar, the Chief Executive of the NHS Confederation stated that 1 in 4 people who were in acute hospital beds could recover at home if better support were available.

Over the weekend, the government in their own now predictable fashion, entered the ‘policy making’ platform by flinging £170 million at the ‘problem’ of older people taking up these valuable hospital beds. That computes according to this article in the Guardian as a one off payment of £1m to each council to help deal with this awkward problem.

The thing is while not wanting to scoff at money offered, it’s hardly the best targeted or thought through way of delivering a better system of care for older people.

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