Mind the gap

Dementia making the headlines isn’t anything new and today’s make for fairly depressing, albeit highly predictable, reading. Anyone currently involved in dementia care in the UK, be that as a person with dementia, a family member supporting/caring for a person with dementia or a professional within health and social care, wouldn’t have been surprised to learn that findings from an Alzheimer’s Society survey of over 1,000 GP’s that was published today found the following: 

1.     There are big gaps in post-diagnosis support from health and social care services, with social care particularly singled out - two-thirds of GP’s surveyed said patients don't get enough provision from adult social services after a diagnosis.

2.     Unpaid carers (family, friends and neighbours) are being left to care for loved ones without the support they need.

3.     GP’s in areas that don’t have good post-diagnosis support provision are more reluctant to diagnose people with dementia or refer their patients to memory services for diagnosis.

Out of these headlines I suspect that council’s will be criticised for not providing enough social care support (which of course most councils are going to struggle to do in the current climate of austerity and huge cutbacks), carers will be given masses of sympathy (when in reality they would rather have action to help them not public pity), and GP’s will be lampooned for not offering more support themselves and not diagnosing patients who they may suspect have dementia (even though General Practice is under more pressure than it’s ever been in the history of the NHS).

 

Picking up on the diagnosis point, however, really gets to the heart of the issue for me. When dementia was first declared a governmental priority, the initial focus was on improving diagnosis. Fine, you might think, it’s important we diagnose people. Well yes, except that if you diagnose someone but offer them and their family no support all they have is a label to hang their symptoms from and absolutely no idea where to go next or how they might live well. 

 

Those issues then quickly fuel the problems that wider family networks have in providing support and care, and of course when the inevitable breakdown comes there is an increased need to utilise health and social care services, which are often either inaccessible, vastly over-subscribed or have disappeared as a result of cutbacks. Even when there is the possibility of localised support, there is often no one to help navigate complex health and social care systems, with GP’s under immense pressure and third sector organisations like Alzheimer’s Society, Dementia UK (Admiral Nurses) and others all needing additional funding from commissioners in order to offer the post-diagnostic support that they are equipped to provide.

 

I’d like to say there are some positives in this latest Alzheimer’s Society survey, but I can’t see any. Yet I don’t think it should be used as a stick to beat health and social care professionals with. That won’t help anyone, least of all the huge numbers of families who are needing support and just not getting it. The buck stops with government, and as I wrote about in the run up to the last election, I fear that many of our politicians just don’t understand the importance of social care and, whilst most are very sympathetic towards carers, the needs carers have - particularly around financial issues, access to training, equipment and breaks - are never comprehensively addressed in legislation.

 

Proper integration of health and social care services, rather than piecemeal promises, a decent carer’s allowance, legally enshrined employment protection for carers who are working alongside caring, freely available training and access to equipment and personalised breaks to help carers, and of course those all-important post-diagnostic services that aren’t subject to a postcode lottery and are personalised, innovative, flexible and based on best practice, are what people with dementia and their families need, and frankly have needed for as long as I can remember.

 

I have repeatedly argued that resolving any potential shortfall in diagnosis is intrinsically linked to post-diagnostic support. More people will come forward with potential dementia symptoms if they feel their local services are ready and willing to help them, and GP’s will naturally have more confidence with the diagnostic process if they know that the best interests of their patients will be served by giving them access to the care and support that they need. The key point here, though, is that the care and support actually needs to exist!

 

Allowing diagnosis and post-diagnostic support to get so compartmentalised was a huge mistake that’s leaving more families than ever before to pick up the post-diagnosis pieces alone. I suspect that diagnosis was seen as a ‘quick win’ in terms of statistics – by adopting case-finding in hospitals and GP’s surgeries, people who were developing dementia symptoms were always going to be identified in higher numbers than before such an exercise began.

 

Diagnosis was a major theme in the 2009 Dementia Strategy, and again in the 2012 PM Dementia Challenge, yet in 2015 whilst diagnosis rates have increased to a more ‘politically acceptable’ level, the personalised support that MUST follow that diagnosis is something many parts of the country are still trying to design, and that’s before they even progress to funding and implementation. 

 

To say this gap in post-diagnostic support angers me would be a bit of an understatement. When my dad was diagnosed, long before strategies and PM challenges, we had about as much support as many families do now. In other words, nothing. The only advantage families have now, as far as I can see, is that with improved awareness of dementia has come a wealth of online and paper-format resources, more helplines, and the hope that with increased political focus will come the action that is so badly needed. 

 

If I could find one chink of light at the end of the tunnel, and it’s stretching a point a very long way, it’s that dementia has come out of the shadows. That, however, is pretty scant consolation for families affected by dementia who feel isolated and unsupported, and whose loved ones living with dementia could be living so much better if only they had access to expertise, advice and support.

 

Closing the gap between diagnosis and post-diagnostic support must happen, and it must happen quickly.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook  

 

Focus on carers

Today sees the start of the annual Carers Week, an important campaign to help raise the profile and needs of carers in the UK and celebrate the vital contribution they make to society. This year's theme is 'Carer Friendly Communities', which dovetails neatly with the long-standing ambition to create 'Dementia Friendly Communities'.

The idea of 'friendliness' it seems is everywhere, and carers are certainly long overdue their dose of understanding, support and recognition. However, the ambition to create ‘Carer Friendly Communities’ isn't going to be one that is easily achieved. Carers face a multitude of issues and problems, which (in no particular order), include: 

•   The low level of Carer's Allowance, and fears that it could face cuts in the future (rather than being increased). Many carers are already on the breadline or in debt.

•   Prejudice in the workplace. Many employees who are also carers can find it impossible to juggle employment and their caring role, and unlike the awareness of issues parents of young children face, the issues carers face when caring for adult loved ones are often poorly understood by employers.

•   Lack of training. While training for our health and social care workforce may be patchy, education and training are often completely non-existent for carers of loved ones. It’s a role you often ‘fall into’ and have to learn as you go, despite some of the demanding and complex tasks many carers undertake that, in the professional workforce, it would be unthinkable not to provide training for.

•   The complexity of navigating health and social care systems. This complexity can be so great that professionals in health and social care who then become unpaid carers for family members or friends often report huge difficulties with navigating the systems they work in. Against that backdrop, what hope is there for the majority of carers facing these circumstances?

I’m sure even the most ardent supporter of ‘Carer Friendly Communities’ would agree that it will be impossible for communities alone to provide solutions to these issues, but that shouldn’t detract from the laudable aims of ‘Carer Friendly Communities’, not least because I believe that collective local action can improve the lives of many people in our society, including carers.

 

Potentially living in a community that understands the needs of carers could help with:

•   Support for carers. This could be anything from social interaction with likeminded people to help with having a break or a holiday (often carers want a holiday to be facilitated that can include their loved one).

•   Greater understanding of the needs of carers and the people they care for. This could be anything from making transport more accessible to providing toilets that a carer and the person they are caring for can go into together in order to change an incontinence pad.

•   A more enlightened attitude. As I explained in my G8 Dementia Summit Film, we would take my dad to coffee shops and people would often stare because we had to spoon drinks into his mouth. Educating communities about different conditions, and the ways in which families are supporting people living with those conditions, can help to remove a lot of stigma and discomfort families who are caring for a loved one with conditions like dementia feel when they go out. If we don't address these issues they can, and do, lead to unbearable levels of social isolation.

•   Support for life after caring. This is a vitally important area of carer support that is largely ignored. If a person goes from being a carer for many years to no longer fulfilling that carer role, for whatever reason, that is a life-changing juncture for that individual. If the person they have cared for has died, there is also a need for specialised bereavement counselling that takes into account not just the personal relationship the two people had but the care and support relationship too.

My reservation is always around how the extra support carers need is going to be funded. We know that social care is on its knees, and although there is a huge amount of potential to turn care homes into community hubs (this could help with some of those socialising and training issues), or to utilise and develop some of the fantastic potential within the charitable and community interest sector, initiatives - however well-meaning - cannot survive on fresh air alone.

My personal view is that as a country we don't value carers enough. Time and time again the huge contribution they make to society and the immeasurable problems that would be created if every carer suddenly decided to stop caring are conveniently forgotten. We must NEVER overlook the fact that without families, friends and neighbours caring for the people they love and are close to, our health and social care systems would completely collapse. Carers prop up so many services, helping to keep loved ones out of hospital and out of care homes, but many do this as isolated, bewildered, exhausted and marginalised individuals who often fell into caring and see no ‘way out’.

In reality, most carers actually don’t want a 'way out', but they are driven to despair and hopelessness by the lack of support. It is a lack of support that shames us all. Greater support for carers would be amongst the finest investments we could ever make to our country for today, tomorrow and the future. If ‘Carer Friendly Communities’ proves to be one way to facilitate that then great, but I would also urge our politicians and policy makers to do their bit, because without their input and influence this focus on carers will just be another well-meaning exercise with no tangible inroads being made into the issues that trouble carers the most.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook  

Taking stock

Last weekend marked the 3^rd anniversary of my dad’s death. Alongside remembering that immensely sad day, it also prompted a lot of reflection, both personally about dad’s life and the gap he has left behind, but also more generally about how much has, or hasn’t, changed in those three years for people who are living with dementia, their families and the professionals charged with providing care and support.

My dad died just a month after David Cameron had launched the first ever ‘Prime Minister’s Challenge on Dementia’. It some ways it seemed very ironic – the country was finally waking up to dementia as dad was going to sleep for the last time. There was nothing in that Challenge that could possibly benefit dad, but I could see that it provided a focus that was badly needed for people who were newly diagnosed or who would go on to develop dementia in the future.

Since then there has been an increase in the diagnosis rate, an improvement in UK-wide awareness resulting in 1 million Dementia Friends, the creation of some ‘dementia friendly communities’, more dementia training for health and care staff, a renewed research effort, and an unprecedented global focus on dementia.

All that sounds very impressive, and undoubtedly it is an improvement on where we were 3 years ago, but I remain frustrated. Maybe I’m impatient, I know Rome wasn’t built in a day, and obviously care and support for people with dementia cannot be transformed overnight, but I remain unconvinced that everything that’s been done, great though it is, has really benefited people with dementia to the extent that the majority could say they are living well, or at least living better.

A major contributing factor to this situation are the cuts in social care, something I recently wrote about for Huffington Post. Most people who develop dementia have far more need for social care services than health services over the course of their dementia. Yes healthcare is important when diagnosing dementia, providing effective management of any long-term conditions that the person might have alongside their dementia (for example diabetes or high blood pressure), treating the common infections that people with dementia often develop as dementia progresses (urinary tract infections and pneumonias), and caring for people if they have a fall that requires hospital admission, but healthcare isn’t the bread and butter of dementia care.

Keeping people safe and well in their own homes for longer is the widely-agreed gold standard for dementia care. It’s what most people with dementia want and, frankly, are entitled to. It will always live in my memory that my dad was taken to hospital having collapsed from a larger stroke and never returned to his home. Not through his choice, or ours, but because he was deemed to have been too much of a risk to himself and others if he returned home. In hindsight, that could easily have been code for, “We don’t have any suitable accommodation that could help to keep him independent, nor can we provide the professional support he needs or support you as his family, therefore it’s just easier to keep him in hospital and then put him in a care home.”

In the 3 years since my dad died, or indeed the 12 years since he was moved into his first care home, I’m not convinced that any policy by any government of any political persuasion has actually ensured that if we lived that experience with my dad again now that the outcome would be any different. Daily life for people with dementia still, pretty much, amounts to muddling along in your own home (if you're 'allowed' to) - with some modifications if you’re fortunate enough to be helped with those, or indeed can afford them yourself – and being means tested for home care which might, in reality, amount to highly inadequate 15 minute visits that neither you as the person with dementia, or the care worker, actually feel achieve anything. The alternative is either hospital (free care) or a care home (means tested).

We know that people with dementia are ending up in our overcrowded A&E departments far too often, mostly because they haven’t been getting the social care that they need, and then proceeding to languish in hospital beds for far longer than they should be (much like my dad did, with one 3-month spell in hospital seeing him lose half his body weight as he was drugged with antipsychotics) all because of endless assessments and wrangles over funding.

We also know that GP’s are under pressure to diagnose increasing numbers of people with dementia, often referring them into memory clinics with long waiting lists. There is precious little support for people who are newly diagnosed, with too few specialist dementia nurses and then, of course, there are families, many of whom want to support their loved ones but are given scant help with this and a paltry carers allowance to live on.

Meanwhile, I’m not convinced the Care Act, that great bastion of apparent overhaul in caring for and supporting people, will provide much tangible assistance. Yes, there are entitlements to assessments, Councils have to help families by providing information, and next year sees the cap on care costs come into force, but for many families this means-tested social care system will still leave them with complex financial issues to overcome.

Add all this up and it amounts to a not particularly impressive stock take. I still don’t think most people with dementia feel listened to, nor do their families. A lot of what’s been achieved, it could be argued, is fancy window dressing – things that look good and are relatively easy to succeed with, whilst side-lining the really big issues about how we provide holistic, person-centred support for each individual living with dementia, preserve their independence for the longest possible time, give carers and families the help they require to continue to care and not breakdown, and properly provide and fund the social care people with dementia need.

I hope that dementia remains a priority for the next government, but even more than that, I hope politicians start to get to grips with the issues that are REALLY challenging for people with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Dehumanisation in hospitals

I have many personal dislikes to language used in relation to older people or people who are living with dementia, but a particular phrase is the subject of this blog mostly because I think it says a huge amount about how the healthcare system sees the very people it is there to serve.

‘Bed blocker’ has become a commonly used phrase to describe a person who is medically fit to leave hospital, but who cannot return to their previous life – perhaps living alone in their own home – due to their personal care and support needs. People who are living with dementia, whether it’s diagnosed or not, are at particularly risk of longer stays in hospital and by default adding the unwanted stigma of being a ‘bed blocker’ to their already stigmatised life.

Such delays in hospital discharge are usually caused by our bloated health and social care systems arguing over who is going to assess, organise, provide and fund an appropriate care package. It is often exacerbated by health and social care professionals failing to communicate between themselves, external care providers, the person - the ‘bed blocker’ - and their family.

What is really lost when we talk about people who are in hospital for longer than they should be is that every ‘bed blocker’ is an individual with a rich life history, a home they are perhaps longing to return to, and immense confusion and frustration at remaining in hospital. No one is more greatly affected than the person who has been labelled a ‘bed blocker’, which is what makes this label all the more offensive.

As a frail older person with dementia in hospital you are largely powerless to decide when you leave, and to some extent, where you might go. Yes, you can discharge yourself, but many people don't have the physical or mental capability to do that, particularly in an environment that strips them of their identity and life skills. They may not be able to find their clothes and organise the transport needed to leave, let alone be able to access their bathroom and bedroom, prepare food and drinks or take medication once they are out of hospital.

The situation is particularly acute for people with dementia because they have increased care and support needs that are very specialised, and with our fragmented health and social care systems it can be difficult to agree, source and fund that specialist provision. The person themselves may not be able to make their own decisions, or possibly could but they don't have access to appropriate advocacy services, and if the person has a family, they aren’t always nearby to provide additional help.

These are older people who are frail and vulnerable, and yet they are seen as being in the way and wasting NHS resources, despite the fact that throughout their working lives they would have helped to fund the NHS. ‘Bed blocking’ has even become an argument for some people who are keen to promote euthanasia, a concept that I’m not sure could be any more dehumanising.

Technically, my dad was a ‘bed blocker’. The two inpatient stays he had whilst waiting for care home placements were lengthy – one stay was three months – and as he became more frail in the last few years of his life, he was admitted to hospital  from his care home with both chest and urine infections. As he was already in the social care system and with funding in place, he did at least have somewhere to be discharged back to, but the care home still had to assess him and agree to have him back.

We were more fortunate than many families whose ageing loved ones yo-yo between hospital and home, struggling in both settings, or who watch their loves ones deteriorating in hospital while they become pawns in funding assessments between health and social care services. Hospitals can be dangerous places for older people who are living with dementia, especially given hospital infection rates and staffing levels. Who would want to lay in a hospital bed day-after-day with only hospital food to eat and with an unbroken night’s sleep an impossible dream – it’s hardly a preferable choice is it?

Yet somehow the term ‘bed blocker’ makes it sound as if the person is actually deliberately blocking the smooth operation of the hospital by outstaying their welcome. It might be a simple term for a hospital manager to illustrate the capacity crisis in their service, or for a journalist looking for a headline grabbing phrase, but it remains about as far away from kindness and compassion as you could possibly get.

So can we ever get away from the term ‘bed blocking’?

Last Wednesday, 11 March, marked NHS Change Day, and although I didn’t personally get involved this year if I’d been creating a campaign it would have been around this issue. The NHS needs to get away from seeing people as a box to tick or a bed to empty. Integration (Joined-up thinking) may be a phrase even more overused than ‘bed blocker’, but I genuinely believe that the answer to many of the challenges the NHS faces with lengthy inpatient stays comes from the availability and funding of social care services.

When the fundamental issues of how and where we provide high quality care and support for frail older people are resolved, we may find we no longer have ‘bed blockers’. In the meantime, let’s stop giving the impression that patients are to blame for being in hospital beds and ditch this dehumanising phrase once and for all.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

15-minutes of shame

As a light was shone, yet again, on the huge inadequacies within our home care services as the issue of 15-minute visits hit the headlines, I decided to time my morning routine. Just how much could I as an able-bodied thirty-something, fairly fit and known to be someone who is constantly on the go, get done in 15-minutes?

Well, the answer was that I couldn’t get out of bed, make a cup of tea, cut, toast and butter my breakfast bread, use the loo, have a wash and get dressed within my 15-minutes. Something had to give for me to make my target, in fact quite a lot had to give in the end, as I like a shower rather than a quick rub over with a damp flannel, I needed to blow-dry my hair, and we’d run out of butter for the toast, so I had to pop to the shop.

It will come as no surprise to my family that it took me more than 15-minutes to get ready for the day ahead, but I hope it provides a sobering thought for anyone who believes that 15-minutes is long enough to fulfil the care needs of an older or disabled person.

This may be a person who will take most of the 15-minutes just to be helped to get out of bed. They potentially then have to choose between having a hot drink, something to eat, visiting the loo or having their incontinence pad changed or catheter checked, having the sort of wash that they would want (imagine never having the chance to enjoy a bath or shower because there is no time to help you with that), getting dressed and having their medication. Even something as simple as a hot-water bottle may not be filled in time to help keep you warm.

All that is before we even get onto the personal interaction (a chat in other words) that so many vulnerable and isolated older people crave, or the care worker addressing any unexpected problems of a personal or domestic nature (health problems, heating breakdowns or water leaks for example – things that cannot be ignored as they could put the person in danger). You cannot possibly even begin to tackle all of these needs within a 15-minute window – it is degrading to the person who needs care to even try, and insulting to the care worker to expect them to hit that type of target.

We need to understand that care isn’t a luxury. It’s not a Gucci handbag or a Ferrari parked on your driveway. It is the most basic, fundamental thing that we all need. Most of us take care for granted because we can care for ourselves without any assistance, and then we have children and naturally find ourselves caring for them without giving it a second thought.

Imagine trying to give a baby all of the care it needs in the morning within a 15-minute window. We have maternity and paternity leave not just so that parents can bond with their child and establish their family, but because that child will need a lot of care. Many adults need similar levels of care and support, in a different context of course, yet many councils believe that it is achievable within 15-minute timeframes.

Our social care system is broken at the point in which we place a stopwatch on care, and why is that stopwatch there? Time is considered to be a useful way in which to price work, and the price on care is being continually squeezed. Public money either isn’t available, or hasn’t been made available, to fund the increasing care needs of our ageing population who are living longer but with far more complex long-term conditions. Even most people who privately fund their care do not have a bottomless pit of money and are still subjected to 15-minute care visits.

I fear as a nation we simply do not understand what care involves. The complexities of it and the fact that it cannot be rushed. We don’t place enough value of the importance of human interaction and the joy and comfort that it can bring. We don’t see care as an investment a compassionate society should be making, but rather see it as an annoying drain on resources that must be cut back to the bone. We bypass basic human rights, we tolerate the fact that it is undignified and lacking in compassion, and ultimately ignore the reality that it’s dangerous to try and provide care within 15-minute windows. We effectively treat prisoners better.

Yes social care needs more money, and sadly I don’t hold the purse strings, but it also needs an overhaul. Councils, commissioners and care agencies need to look at themselves and be honest – are they really proud of the work that they do? Can they achieve what they expect the average care worker to achieve in 15-minutes, and have they ever put themselves into the shoes of the person needing care?

I challenge you – time yourself. How much can you get done in 15-minutes that involves your personal care, basic nutrition and hydration, and caters for your need to be kept warm? Then consider how mobility problems, reduction in your sight and/or hearing, or any other medical problem might affect your ability to fulfil those needs. Then factor in having someone to help you so that you can overcome the limitations your body places on you. Then check your watch. I guarantee that you will need far longer than 15-minutes to achieve this.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

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...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Why are we waiting?

Whenever politicians are due to proclaim on issues of health or social care, my heart invariably sinks. Well intentioned though some may be, and whatever party-political persuasion they have adopted, I always feel that they never quite grasp just how personal, and therefore important, these policy areas are to the people they are in parliament to serve.

Our well-being, and any decline in that which results in the need for care, is something that occupies most people’s minds at some point, and with increasing frequency diseases like dementia are pervading into previously happy families, bringing with them huge emotional and financial costs and, unlike in the political world, decisions that cannot be avoided.

No one is denying that care is hugely expensive. It is labour intensive by its very nature, needs to be extremely mobile and flexible when helping to keep people in their own homes (which undoubtedly is what the vast majority of people want, no matter what their age or needs) and involves huge overheads and logistical problems if someone does eventually need residential care.

It is also something people really struggle to plan for, mostly because it is impossible to predict if and when illness may strike and if it does, working out what you may have to pay to receive care as there is currently no universal standard on accessing care (all 152 councils in England can set their own eligibility criteria).

Last year it was recommended that a cap should be introduced so that people know that they will never have to pay more than £35,000 in their lifetime for care. Naturally this raised expectations that finally, after so long in the wilderness, social care would become a transparent system whereby you knew the maximum you would have to pay should you need these services, and families would not be in for a nasty surprise.

Typically, however, because politicians need to look at ‘cheaper options’ there is still no concrete plan to move forward with legislation that is craved by people whose lives are affected by this every single day. I have friends whose parents were forced to sell their homes to fund care, losing family homes and inheritance to pay for something that throughout their working lives their parents had believed they had already paid for should the need for care arise.

I accept that the state has burdens on its resources that outstrip what is available to spend, and care with its high cost, complexities, and the growing demands of an aging population is a massive drain on budgets already, just by funding people who do not have any assets to pay for their care. Ultimately, however, this is about long-term strategy, effectively spending to save. Without a clear, fair and workable social care system, healthcare costs spiral. The huge injustice of the blatantly two-tier system we have now, right down to the differences in residential fees being paid by privately funded and publically funded people, has to change, and fast. If people are going to have to contribute to their care costs, they should know what their maximum liability will be, otherwise old-age and ill-health become like playing roulette.

I also feel, probably because of my personal experiences, that there is nothing more important to fund than the care of our most vulnerable people.  Either England is a compassionate society or it isn’t, and while our politicians decide whether it is, people can spend weeks languishing in acute hospital beds, costing the NHS a fortune because they do not have the right care package, or being sent home with inappropriate or non-existent care packages that mean they will be back in the very same hospital bed within a few days or weeks.

So what have the government offered people in England? A belief that capping care costs is the ‘right basis’ for change, but no commitment on what the change will be. A deferred loan scheme for people who need to pay for residential care, meaning that the cost of care can be taken from their estate after their death. However the state will charge interest on this (currently, where this scheme is available, interest is not charged). A national standard for getting access to care, ending the postcode lottery where councils set their own criteria for funding (although if your council happens to be more generous than others you may be in for a shock), and a pledge that you will be able to move your care package to another local authority should you wish to, without having to be re-assessed.

There is also a proposal to pilot a scheme to make personal care at the end-of-life free, to reduce the burden on hospitals. On the face of it this is an excellent idea, but it has to be borne in mind that if people are not able to have the care they need in the months or years preceding this time, the end of their life may come considerably sooner than it should do, which in any compassionate society is a scandal.

The glaring omission comes in the lack of a real framework for change, and on the key issue of capping fees, we are no further towards a resolution than we were before the Government’s announcement. In fact, potentially there may be no concrete decision until the next spending review, so it is possible that legislation is years away. The government say they want people to, “Get the care and support that they need to be safe and to live well so they don't reach a crisis point,” but by delaying this decision for such a long time, many people will wonder if those in power really care about their well-being at all.

Constantly fighting the system, trying to work out what you are entitled to, at the same time as dealing with the trauma and emotional upheaval of a loved one with a disability or illness, is exhausting for families at the very moment when they want to spend quality time with their loved ones, and particularly in the case of terminal diseases like dementia, make the most of every single day.

The plan to cap care costs may be on hold, but sadly the need for care will never be on hold. The politicians may want to delay their decision, but every day people across England are faced with health and social care decisions that cannot be delayed. Some of us do not get to walk away and think about what we are going to do for a few years.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook