Wednesday 27 February 2013

Be kind to each other

There is something incredibly simple, natural, easy to deliver, easy to comprehend, wanted, needed and with a huge power to heal that I believe everyone desires when they interact with a fellow human being. It’s almost indefinable, and yet when you are touched by it you know you have been. It can be momentary and yet be remembered forever. It costs nothing, and yet is priceless. It is called compassion.

When I say we all desire it, I would add that there are times when it is more important than mere desire, it’s essential. When we are at our most vulnerable, emotional, confused, in pain, frightened and fearful of the future, then it can be the ultimate medicine for bringing calmness and serenity, security and comfort. Such power should surely make compassion the cornerstone of health and social care, and yet sadly that isn’t always the case.

In the wake of the Francis report into the Mid Staffordshire NHS Foundation Trust, I heard one commentator say that compassion was unachievable in the NHS.  Another ‘expert’ claimed that he didn’t believe staff could be automatically expected to be compassionate, and concluded by saying that he didn’t believe you could teach compassion. So just how do we inject this vital quality of understanding, empathy and love into the way we care for people?

After the gross negligence found within Mid Staffs, and the appalling way it was allowed to happen, and continue to happen, until many hundreds of patients and families were affected in the most devastating way, it could perhaps be easy to conclude that all hope is in fact lost. Compassion wasn’t on the radar of the staff who allowed those patients to suffer, and die, in such horrific circumstances, and you cannot help but wonder how many other NHS trusts have harboured employees responsible for similarly negligent practices.

Certainly the systems of regulation leave a lot to be desired if such catastrophic failings can occur, and a fundamental re-evaluation is urgently needed of how we care for patients across health and social care. Organisational change will certainly result, in some form or another, from the findings of Robert Francis QC, but what about on a personal level – when did healthcare stop being about one human being genuinely and sincerely caring for another?

In my view care isn’t defined by how many pills you can give someone or how you can cut them open, however important both those approaches may be for an individual’s treatment and recovery. It is how you treat that person on a personal level every time you see them, every time they need your help (even if that is the twentieth time of asking in the last hour) and every time you go to them to give them something or do something for them, even when they may appear hostile or indifferent.

By putting yourself on the same level as the person you are caring for, seeing the world through their eyes, and adjusting everything you do or say as a result, you are being compassionate. You are putting their need to be understood and shown love above your need for speedy completion of a task. Ultimately it is about treating that person, who you’ve possibly never met before and may never meet again, as you would wish to be treated yourself.

I believe such qualities, if they aren’t immediately apparent within a person are, generally speaking, something that can be taught by those capable of setting that example. Simple observation of compassionate care in action, explanation of the principles above, role-playing situations, and finding that point within an individual that touches their heart and soul is what will show most people the need for a compassionate response within their work. Give them the freedom to express that compassion and voila, you have compassionate care.

Many of the structures within health and social care actually directly preclude the delivery of compassionate care. We put staff under huge pressure, give them unmanageable workloads, put paperwork before patients and fail to allow for the need to stop, take stock, approach someone with a compassionate attitude and give that person the time they need with their patient so that both the professional and the patient has had a meaningful interaction.

Of course I would be the first to acknowledge that some people do not have the ability within them, no matter how much time you invested in them, to be compassionate in their care. They are the people for whom the Francis report needs to herald a change of career. I have seen for myself (and wrote about it here), what happens when someone who is a registered nurse, and yet doesn’t have a caring bone in her body, is allowed to manage a care home of extremely vulnerable and frail people with dementia. The outcome of that decision was, ultimately, my father’s death. That situation isn’t just reserved for social care settings either. She could just as easily have been a nurse on a hospital ward – at Mid-Staffs there were many like her I suspect.

I don’t, however, feel that all hope is lost. I saw compassionate care given to my father on many more occasions over his 19 years with dementia than I ever saw practices or interactions that I considered unacceptable. Whether in care homes, hospitals, primary care or support services, we met some amazing people, dedicated and compassionate, doing the very best they could in often extremely difficult circumstances.

So what does the future hold for compassionate care within the entire health and social care systems?  I remember at a conference last autumn I was chatting with a colleague who pointed out that so much in society could be improved by simply showing kindness to each other. So simple, so vital, and so undervalued. Maybe in the wake of the Francis report those who control our health and social care services, and those who deliver that care on the frontline, will look again at whether what they do is compassionate and if it isn’t, why it isn’t.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 20 February 2013

Joined-up thinking

When I last wrote about social care funding (Why are we waiting?), I implored our policy makers to produce a workable solution to end the uncertainty many people face about how they will pay for care. The recent announcement by the government that introduced measures designed to stop families having to sell their homes was generally welcomed, but so much more needs to be done to change the face of social care in England.

I have never understood, and I don’t think I ever will, the way in which we have managed to compartmentalise healthcare and social care. To me they are pretty much one of the same thing. Good social care alleviates the burden on the healthcare system. When people are cared for well within the social care structure, whether that is in their own home, or in a care home, they place less of a burden on the health service, freeing up beds in hospitals and appointments in clinics.

Yet while we have a National Health Service for healthcare, social care is a means tested system where financial goalposts can be moved by politicians and where, even under these latest proposals, so-called accommodation costs, such as food, heating and paying for a room in a care home are not part of the cap. So even though someone may need to be in a care home to receive the care that they require, for their wellbeing and safety, and certainly need to eat and keep warm in order to remain in good health, they are still expected to pay for that if they have the ability to do so (the cost will be around £12,000 in April 2017).

That would be perfectly fair enough, if only the same applied to healthcare. Yet that is free at the point of need, something I must add I wholeheartedly support, but I just feel that social care has become the poor relation. You can go to hospital, be given accommodation and fed, and yet surely we should be supporting people to avoid doing that precisely because acute care facilities cost so much and are under huge pressure, not to mention the negative effects on patients from lengthy stays in hospital.

Then there is the question of what happens to people when they enter what I would call the social care funding no-mans-land. Their need for social care has been identified, but the assessments need to take place and appropriate care sourced. Imagine what might happen to someone who doesn’t recognise their own need for care and doesn’t want to pay, or someone who knows they need care, cannot afford it, and must wait on one of these drawn out assessments of their finances to confirm that. In that intervening period they could easily hit a crisis point and end up needing our healthcare system to pick up the pieces, usually at great expense.

Then there are those who need social care when they are facing the end of their life. Hospices are wonderful, but there aren’t enough of them and they are generally focused on cancer patients. They don’t usually help people with dementia for example. So you could end up dying in hospital, something most people would never want to do, at home with less than adequate care if you don’t have a package of care funded, or die waiting for a bed in a care home to be found and funded. These ‘solutions’ are hardly something for our society to be proud of at this most sensitive time in someone’s life.

How can we ethically allow social care to continue to be the poor relation in the ‘care’ family? Health and social care should be a partnership, yet when it comes to financial demands, so often it is a competition to see which side can palm off their patient onto the rival just to ease their own budgetary constraints. As the desire for CHC funding has escalated, many people have even started up businesses to advise families on how to appeal, even after a relative’s death, against a decision to deny funding.

Then of course, like so many aspects of the ‘care’ family, you are also subjected to the postcode lottery when it comes to funding. Local authorities it seems are at liberty to interpret the rules on someone’s care needs differently, so while in one location you may be assessed and receive full funding for care, in a neighbouring authority the outcome may be very different.

Admittedly you can now argue that at least by April 2017 people won’t, in theory, have to sell their homes to pay for care, but for everyone currently within the social care system, and those about to enter it, that is fairly cold comfort. The social care system isn’t fixed by such a relatively narrow adjustment in the parameters, and many families still face uncertain futures.

Yes, you may get to keep the family home, but what you will go through to find care, fund it and live with the consequences of a system where standards are often not what they should be means that you are hardly likely to be celebrating from the rooftops. Ultimately social care needs an overhaul that transforms this fractured system and makes it equitable to healthcare. It requires joined-up thinking on a vast scale and a recognition that, with an ageing society, social care has to be amongst the very greatest priorities that politicians of all persuasions have.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 13 February 2013

Home alone

Imagine that every morning when you wake up, you are unable to get out of bed without the help of a carer. You might wake up quite early, needing the toilet or wanting a hot drink, but you live alone and rely on people who are paid to come and look after you.

You may wait many hours for help to arrive. It may never come if the home care agency don’t have enough carers on duty, or it may be much later than you expect because your carer has been delayed helping other people. In that time you may soil yourself, become dehydrated, or attempt to move around and end up falling, potentially breaking a bone and ending up in hospital, the shock of which, in someone who is elderly, could bring about premature death.

This is the reality that many single, vulnerable, elderly people with physical or mental health problems face every day. When care does arrive it can often be rushed, with the carer unable to give all of the help that is required. Imagine if you had to choose between being washed and dressed, helped to the toilet, fed or given your medication? You need assistance with all of those tasks, but your carer only has time to help with some of them, leaving you hungry or dirty as a result.

For many people who live alone, the carer that comes in to help them may be the only person that they see or speak to all day, and yet there is no opportunity for meaningful interaction. This is a system that is almost de-humanised, where the people who need care are effectively on a conveyor belt, and carers are operatives in a factory environment where output, rather than quality, is king.

Over the course of just a few weeks of home care you may see many different faces, each time having to try and explain (if you are able to) what you need and want. The turnover of staff is high because this is low-paid, often poorly trained work, where staff are put under immense pressure to meet deadlines, rush care, make stark and extremely unpleasant choices about what they realistically have time to do for someone, and where every shift leaves them feeling physically and mentally exhausted. Many carers often end up completing tasks in their own time, such are the time constraints enforced by their employers.

Morale is low, carers feel undervalued, and those who chose this type of work precisely because they genuinely wanted to care for vulnerable people feel utterly let down by a system that is run around two defining factors – the time on the clock and the money being paid to the home care provider.

Don’t run away with the idea that having home care is a cheap option for the most vulnerable, elderly citizens in our communities, because it isn’t. Universally however, most people would rather remain in their own home than move into alternative more supported accommodation or indeed into a care home. I would argue that everyone has the right to do that, whenever practically possible, and therefore in a compassionate society this should be supported, not just financially for those who need assistance paying for it, but from a cultural point of view as well.

The culture that defines how we care for older people in the UK is still one where we don’t value the person enough. As a society we don’t make provision for elderly people to exercise choice and be supported to do that, we cut corners because we think it doesn’t matter, we try to rush those who are naturally slower than they once were, we are incapable of seeing beyond ‘doing the basics’ and we ignore the need every human being has to feel cherished, loved, cared for, appreciated and listened to.

It can be very easy to blame the carers on the front line who have the day-to-day contact with our vulnerable elderly people, and there are certainly those within this line of work who should never be caring for anyone, least of all those in greatest need. But I believe that so much of what is wrong within the care system, and home care in particular, is about what happens within the companies that provide care and the authorities who commission it.

Many home care providers will say that they don’t get paid enough by councils (whose budgets have been squeezed in this area) to provide the care that people need. Councils will say that for the money they are paying, they expect far better for the people they are responsible for supporting. The real truth probably lies somewhere between these two viewpoints, but what I always find staggering in these debates is how the needs and the voices of the people who are on the receiving end of this care are generally never heard, and even more worryingly, those who are making the decisions often have no real appreciation of the situation that these people are in.

Of course we know of the cases, all too common, where home care has gone so catastrophically wrong that someone has died as a result of neglect. Yet all over the country, every day, neglect is happening, often not with immediately tragic consequences but with the slow-burn, saddening effect of reducing the lives of people who were once vibrant, hard-working, energetic and valued, into something that is a daily struggle to exist, a struggle that for many may not feel like one that they want to keep fighting for.

I couldn’t be a home care worker, simply because I could not cope with leaving people who needed me, at the same time knowing that if I stayed longer I let someone else down. It is an impossible situation. Home care is a vital resource that a compassionate society should value. Carers should be well trained, well paid and with enough colleagues to give our cherished elderly the help that they need in a time frame that they can cope with.

This is a job where you care for people with very high dependency and often multiple problems – it should be a profession with a far greater standing than it currently has. Ultimately care should be about helping people to flourish, live their lives well and feel happy and fulfilled. It should never be about losing dignity, being lonely, frightened, misunderstood, neglected and potentially an early death. If you offered anyone the ‘services’ in that last sentence, they would never sign up for them.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 6 February 2013

Part 2) When a label isn't enough

***This is a two part blog post***

Please read: Part 1) When a label isn't enough

Supporting someone throughout their dementia journey is vital
Supporting someone throughout their dementia journey is vital
Regardless of how much the government needs clear statistics of exactly how many people have dementia in the UK, presumably so that they can plan and fund services accordingly (we hope!), this must not come at the expense of the individual. Which is why, whilst I am pro early-diagnosis for those who seek it, I am completely against screening (or case finding) the population for dementia under the current proposals for doing this.

The plan that is currently in the public domain is for GP’s to assess all patients over 75 for dementia within their routine appointments. This means that you could turn up to see your GP with a problematic ingrowing toenail and then be asked questions about your memory. Moreover, since this is not an official screening programme, unlike for example the tests ladies are invited to attend for breast and cervical cancer, the patient will not have the opportunity to plan to take a family member or trusted friend to the appointment with them to provide support.

This covert tactic of screening (case finding) the population is both fundamentally wrong and goes against the principles of patient choice. It also undermines the patient’s relationship with their doctor, potentially destroying trust, and could lead to patients avoiding seeing their GP for health problems that could require urgent care or issues, like for example with vascular health, that could in the end lead to dementia if untreated. The only option left open to patients who need to see their doctor but do not wish to answer questions about their memory will be to refuse to comment (which still ticks the box that requires the investigation to have been attempted).

Within hospital settings, doctors are already required to assess all patients over 75 who have been in hospital more than 72 hours to see if they have dementia. Doctors are meant to use their discretion as to the ability of the patient to undergo such questioning if they are still very poorly, but with the NHS chronically overstretched, again this is likely to turn into another box-ticking exercise.

At this point, I should stress that in both primary care and acute medicine, it is of course possible that dementia may be contributing to the condition that the person has presented with, and therefore investigations for dementia in those cases would be necessary to treat the person holistically and are entirely appropriate and justifiable. However, random assessments based on age, without informed consent or the chance to have someone close to you present, are in my view unethical.

Screening is also not supported by the current guidance from the National Screening Service – their view is that an accurate method for screening the population for Alzheimer’s disease (just one form of dementia – imagine the complexity of screening for the many different dementias) doesn’t currently exist. If they are right, these covert plans could lead to many false positive results, a huge amount of unnecessary anguish and drugs being taken that shouldn’t be, as well as potentially life-changing decisions being made as a result of entirely inaccurate assessments.

I am also concerned that focusing on diagnosis in this very mandatory way, based largely on someone’s age, brings up other issues. It helps to re-enforce the viewpoint within the health and social care systems and the wider population that dementia is a condition of old-age, which it certainly isn’t exclusively at all. By doing this it means that potentially people with early-onset dementia (dementia in someone under 65) could be ignored because their age demographic doesn’t fit the ‘considered norm’.

I also personally feel it is very disrespectful to our older generation to subject them to this type of widespread scrutiny, or case finding as it is otherwise known, that I suspect may well be very unwelcome – indeed has anyone even asked this huge swathe of the population if they agree with this proposal? Dementia is a stigmatised condition and many people, especially older people, have very negative viewpoints about it and huge fears about developing it. Like most of us, they will increasingly know of someone with dementia, and may have heard extremely negative stories about their care and support. The last thing they want is to feel as though they are being herded like sheep into a particular pen. The health service really must grasp the concept that everyone is an individual and act upon that in every aspect of healthcare, rather than having one-size fits all tick-box exercises for everything.

Creating awareness, busting myths, tackling stigma, improving the breadth of specialist dementia services, removing the postcode lottery around accessing services, sorting out adult social care funding so that the system is fair and equitable, providing carers with the support that they need, and investing in therapies that make a tangible difference to people’s symptoms and improves their quality of life will naturally help to change perceptions of dementia, and encourage members of the public to come forward of their own accord to ask for help if they, or their family, feel it is needed.

At present, many people who are already diagnosed, and their carers, receive little or no help with understanding dementia, day-to-day living, or planning for the future. Placing potentially thousands more people into that vacuous trap is not helpful to anyone other than those who want to gather statistics. You may argue that accurate statistics are needed to plan services, but we do currently have a number for people diagnosed with dementia and we have so far done nothing to plan or implement services that support all of them, or from what I hear, even a majority of them.

So why are dementia diagnosis rates so patchy around the country? I don’t believe that this is as a result of there being a widespread ‘no cure so no point getting/giving a diagnosis’ culture. I suggest this correlates with the levels of awareness and support in those areas. If local health and social care services are run by sympathetic people with extensive training or professional interest in dementia, of course people with dementia who come into contact with those services are more likely to be diagnosed quicker and receive better care, reassurance and advice.

Equally, if local dementia activists have done a wonderful job of raising awareness, and numerous thriving community services exist and are well supported by local businesses and media, the ‘dementia message’ will seep into many more homes and dementia will not scare people in that community in the way that it might in others. If people hear about the good care and support that their friends, colleagues and neighbours have had when they first noticed dementia symptoms, they are more likely to seek help themselves if they develop problems.

In the end, like most things in health and social care, dementia diagnosis rates come down to your postcode. Perhaps the irony of these massive differences in the diagnosis rates between different health authorities only further highlights the need for ‘dementia friendly communities’ across the UK. If these truly existed within every community, dementia diagnosis rates would undoubtedly rise because people would feel comfortable talking about, and living with, dementia. Likewise, if we had effective, long-running  countrywide public awareness campaigns, like those mounted for certain types of cancer, again people would think, assess, understand and be more willing to come forward.

There are no quick fixes to turning the UK into a country where people with dementia are not stigmatised, where they and their carers are fully supported, where a diagnosis isn’t simply a useless label, and where communities are truly dementia friendly. This ill-thought-out screening/case finding plan is not the answer. Early diagnosis must involve patient choice and, crucially, post-diagnosis support. Built into that there must be involvement and support for those closest to the person with dementia, if the person wants that, at every stage of the dementia journey, from diagnosis to end-of-life, in order to make each individual dementia journey the best it can possibly be.

Bring all these factors together, and dementia diagnosis, care and support would be revolutionised in the most person-focused, carer-focused environment imaginable. The question is, can the UK rise to the challenge?

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Part 1) When a label isn’t enough

***This is a two part blog post***

Supporting someone throughout their dementia journey is vital
Supporting someone throughout their dementia journey is vital
Early diagnosis of dementia is becoming a hot topic in the UK, with a multitude of different approaches including a campaign to increase the numbers of people seeking help, and proposals to screen (case find) everyone over 75 for the disease when they attend their GP's surgery. As opinions become more entrenched, the medical profession appears divided on the merits of how to diagnose and when to do it. Meanwhile politicians, desperate to improve statistics, seem hell bent on labelling as many people as possible, with little thought, or investment, into the consequences of such a move.

I have written previously about my father’s path to diagnosis (Having that conversation / Don’t wait for a 'crisis point' ), how it took ten years from when his symptoms first appeared to when we had his official diagnosis, and how that diagnosis only came as a result of a ‘crisis point’. I have openly admitted that I wish he had been diagnosed earlier, and I stand by that, but there is so much more to the issue of diagnosis than that statement alone.

When considering my father’s case, bear in mind that he was under the regular care of his GP throughout most of those ten years, that social services also became involved (and remember that back then we were living in the halcyon days before the cutbacks that many adult social care services are suffering now), and that he was visited, at home, by a Consultant Psychiatrist specialising in old age mental health, who we later discovered diagnosed dad’s dementia during that consultation but did nothing.

All the checks and balances were in place that should have ensured that a vulnerable older man wasn’t simply abandoned by the system, and yet he was, and so were we. My wish that dad had been diagnosed earlier is based entirely around the fact that I would have wanted him, and us as his family, to have had support, guidance and access to mechanisms that would have supported his memory and lifestyle and enabled him to live in his own home for longer. Ultimately, I would also have given anything to avoid the ‘crisis point’ that eventually brought about his formal diagnosis, purely because he never fully recovered from that incident.

That ‘crisis point’ could only have been avoided, however, through greater support, not simply by telling him months or years earlier that he had dementia as a standalone factual statement. There was certainly plenty of opportunities to tell him - he had numerous appointments with healthcare professionals during those ten years, that he always attended alone (out of choice). Did they tell him what we later found out that they had always believed, namely that he had vascular dementia? It is possible that they did, but he never told us, or maybe he simply didn’t understand the information or forgot? Sadly dad was not able to tell us then, and never will now.

As it was, my father never had any help from health or social care prior to when we were told of his diagnosis, and after that point we had to fight for everything for him. Maybe his case had already been included in those government diagnosis figures long before we ever knew that he had vascular dementia – if it was, it certainly never helped him avoid his ‘crisis point’ that could have killed him. Of course you could argue about medical confidentially, and that families have no automatic right to information, which of course is true. However, unlike many diseases and conditions that a patient can manage well themselves, dementia  requires a multi-faceted support system to enable the person to find relief from their symptoms, slow down their decline and remain as independent, and safe, as possible for the maximum amount of time.

You cannot simply diagnose someone, give them a few pills and send them on their way. It doesn’t work like that. There is money to be made for pharmaceutical companies if we take that approach, but there is limited, often short-lived and in many cases non-existent benefits for patients. The real help that is needed doesn’t come out of a bottle. There is no huge profit margin to be made out of it. Indeed, helping people to live well with dementia requires community support teams and projects that COST money. Potentially a lot of money if we are going to approach the ‘dementia challenge’ with a real desire to make a difference.

So, is early diagnosis still a positive step? Firstly, I believe that anyone seeking help from their GP because they or their family are concerned about dementia symptoms must of course be given answers – either from their GP or through referral to a memory clinic or other professionals. Should a dementia diagnosis result from that, then they MUST have access to full care and support, advice on lifestyle and therapies to help ease their symptoms and maintain their chosen way of life, and the opportunity to put their affairs in order and plan for their future whilst they are at their most optimum level of ability.

At every stage of this process, the person may want to be supported by those closest to them - family or friends who share a desire to support their loved one on their dementia journey. Those people in turn also need support from the health and social care systems to enable them to help their loved one, so that everyone in the equation can live as well as they possibly can with dementia in what you might call a team effort.

When diagnosing dementia there are key factors that are incredibly important. Firstly, are the diagnostic tools accurate and do they work for every person within our multicultural society, where the population is of many backgrounds and languages? Have other health conditions or side-effects from medication, that can cause similar symptoms to dementia, been accurately ruled out?

I would also look at:

·        The environment used for testing (does it put the patient at ease?)

·        The stress testing could cause to an individual that may obscure the result (you could potentially create ‘exam’ style stress for a patient who is prone to this)

·        The relationship between the person performing the tests and the patient (is this happy and relaxed?)

·        Does the patient have someone with them for support to make them feel more at ease (so that they don’t feel that they are being judged or labelled)?

·        Are you asking someone to perform certain tasks (like mathematical, spelling or historical exercises) that they have always found difficult? After all everyone has their own strengths and weaknesses.

The conclusions that this testing process comes to may indicate dementia. It could also indicate mild cognitive impairment, a condition that may never lead to dementia and yet may be very frightening for a patient. Clear advice and understanding is needed to differentiate between different conditions if patients are to fully appreciate the situation that they are in and their prognosis. At present, many people still struggle to understand what dementia is, and the disease remains shrouded in stigma, so introducing other conditions to already confused minds could be even more baffling and lead to inaccurate conclusions being drawn and incorrect assumptions being made.
Until next time...

Beth x

You can follow me on Twitter: @bethyb1886