GP's and care homes - A relationship under pressure

When I first read that GP's were proposing to alter their current arrangements for visiting care homes, I wasn't surprised. Back when my dad was living in care homes, GP's were already under considerable pressure. I know that one of my dad's care providers had to pay for GP visits, and even then some of the younger GP's in the practice were reluctant to visit the home when residents were quite poorly.

By contrast, the senior GP in the practice visited regularly, had a lovely bedside manner (he was a tall man and would kneel on the floor so that he was at dad's eye level to chat to him), and even attended one of our relatives meetings to discuss providing healthcare for the residents and long-term planning.

I recall arguing with one particular young female GP about whether dad had any 'quality of life' and whether or not he should be given antibiotics for a chest infection (in my view he had quality of life, and he got the antibiotics in the end, which cleared his infection). I also remember possibly the worst experience I'd ever had with a doctor, when an out-of-hours GP visited late one Saturday evening and refused to even touch dad to examine him.

That experience with the out-of-hours GP is perhaps a glimpse into the future whereby the services of the local GP practice could, potentially, be replaced with privately contracted GP's who may not provide the same level of continuity or personalisation. It is not a scenario I welcome or look forward to in any shape or form.

It is my view that a regularly visiting, local GP is absolutely vital to the provision of high quality care in care homes. A good local GP will get to know their patients, pick up on illnesses and conditions quickly, keep medication under review, and provide a useful external oversight role in relation to how well the care home are caring for their residents.

I appreciate that general practice is under severe, unprecedented pressure and needs additional funding, but there is no suggestion that care for other sectors of society needs a separate contractual arrangement with the government and for that reason this feels like victimisation. The argument from GP representatives is that care homes are becoming extensions of hospital wards, and the needs of the people living in them are increasingly unmanageable for local GP's within the current structure and funding of general practice.

It is undoubtedly true that care homes have changed from what they were. Traditionally a residential home accommodated people of relative ability who just needed a bit of assistance with personal care, low level health needs and some companionship, while nursing homes offered the same but with a registered nurse on duty to support people with more extensive health needs, medications etc.

However as people live longer, have more complex long-term conditions, and the NHS is under pressure to discharge people back into the community, it's fair to say that a lot of residential homes have become more like the traditional nursing home model, and the nursing homes of today have morphed into mock hospital wards. But that isn't the fault of the people living there. They aren't in hospital, so don't have access to hospital doctors - the only way they can have care from a doctor is from a GP practice.

By all means GP's need to raise their concerns with the government and seek additional support to continue to provide the care that people in care homes need, but if the government don't agree to a separate contractual agreement to cover GP care in care homes, it would be wholly wrong for care for this sector of society to be withdrawn. People in care homes rarely ask to be living there, and they are as entitled to care from their local family doctor as anyone else. For these individuals, their care home is their home - they shouldn't be penalised for living in a care home by losing their local GP service.

I appreciate that GP practices work best when patients visit them rather than when GP's have to conduct home visits, but if the patient can't get to the surgery then the GP needs to go to them, regardless of where they live. Yes, care homes may have the option of buying in private GP care (if indeed they could afford it, which is highly questionable for many), but from the perspective of residents that isn't the same as having your own local GP who gets to know you and your needs.

If new contractual arrangements with GP's aren't forthcoming, I fear that individuals with dementia may be hit the hardest. For this group of people continuity of care is vital. A good local GP who understands the person - and understands dementia - can make a huge difference to the life of an individual with dementia, as we saw first hand with that senior GP whose interactions with dad were a real joy to see.

Families also rely on good local GP's to help and advise them on the different conditions their loved one has, the various medications they are (or could) be taking, and when discussions need to be had in relation to long-term planning and end-of-life care. Keeping people in their care home for end-of-life care is infinitely preferable to being in hospital, but good local GP support is vital to facilitate that.

I hope that GP's and the government will manage to find a mutually agreeable compromise, and that this issue doesn't escalate in the way the junior doctors contract has. Without such a compromise the people who suffer most will, yet again, be some of the most vulnerable in society, a fact that shames us all.

Until next time...

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Please note: This blog was modified on 12 February 2016 due to information received.

Spotting dementia

My last D4Dementia blog was all about remembering the person, and as World Alzheimer’s Month draws to a close for 2015, I want to tackle another theme from this month of awareness raising – spotting the signs of dementia.

I’ve written previously about the symptoms of dementia, and I don’t want to replicate the information given in that blog post. If you are concerned that you may be developing dementia, or indeed that a person close to you could be, then you may find the information in that blog post helpful.

What I want to explore is the various prevailing attitudes around spotting the signs of dementia, and some of the issues around diagnosis, particularly in relation to health and social care professionals. In my work I see many different sides of the diagnosis coin, from people who are diagnosed in a timely and appropriate way to others who have to fight for a diagnosis. There is also another group who are perhaps best summed up as the ‘worried well’.

One of the most unfortunate side-effects of the fantastic work that’s been done to raise awareness of dementia in the UK is that there is, occasionally, a tendency to see any irregular lapses in memory or changes to a person’s approach to day-to-day life as the beginnings of dementia. Sometimes dementia may be behind such lapses or changes, or indeed MCI (Mild Cognitive Impairment - which isn’t dementia and may never lead to dementia), but it is also important to remember that as human beings we don’t live in a laboratory and are exposed to numerous other factors in our lives that can adversely affect us in ways that may appear to be related to dementia.

I have been reminded of this on more than one occasion so far in 2015 as I’ve gone about some of my consultancy work. I often visit care homes with a remit related to the provision of dementia care and support, and sometimes staff will detail concerns they have about a particular person in their care. From the outset I always say that concerns, no matter how trivial they may seem to the person relaying them, are always valid, and I would much rather social care staff are alert to changes in a person’s health and wellbeing than simply ignoring them.  

However, we must always remember that other medical conditions, side-effects of medication (and particularly multiple medications that stray into polypharmacy), spells in hospital, changes in living accommodation, changes in family relationships or bereavement, and even changes in the care home itself (different staff, routines or redecoration) can cause temporary, and sometimes more long-term, negative effects for older people. 

Those effects may appear to be related to dementia, and of course the development of dementia can co-exist with any of the factors I’ve listed above, but jumping to conclusions isn’t helpful for anyone, not least the older person living in that care home who is perhaps already feeling like they're living under a sizable microscope. Documenting changes to build up a reliable picture, whilst utilising person-centred care skills to address any newly found deficiencies in the person’s care or environment (more one-to-one time, reviewing health/medication, making time to talk and listen to the person, offering comfort, occupation etc) is perhaps more helpful than immediately chasing after a diagnostic label.

The flip side of these circumstances is often something I hear about when family members contact me with concerns about a loved one who is (usually) living alone. Often they will have noticed changes over a considerable period of time, and found themselves gradually providing more and more care for their loved one. For many people, input from their GP, alongside some diagnostic tests and perhaps a referral to a memory clinic is the way in which those concerns are addressed.

But unfortunately that isn’t the case for everyone. Amongst the many families who’ve contact me this year was one who’d had the input of two GP’s over a considerable period of time, with both doctors coming to the conclusion that the individual giving concern wasn’t developing dementia. This was despite, to the best knowledge of the family, neither GP conducting the full range of tests and assessments – potentially, of course, because the person concerned didn’t consent to them.

What happens between a doctor and their patient is of course confidential, and therefore my anecdote will always be open to questioning and counter argument. My main concern, however, is for the individual concerned, whose state of health is putting them at risk of living in an unclean, unhealthy and potentially dangerous environment, and for the family who are struggling to provide the support their loved one needs because they simply aren’t supported themselves.

Whether a diagnosis of dementia is ever forthcoming or not for this person isn’t really the main problem. In theory of course a diagnosis should open doors to care and support, possibly even some medication, but frankly care and support should be there regardless of the judgement of this person’s GP when the family as a whole have clear and unequivocal social care needs.

Hopefully the advice I’ve provided will help this family, and of course you can’t fight everyone’s battles, but I think these two examples really show how polarised and fragmented the situation around spotting and diagnosing dementia remains, and that’s just in the UK. I’d be the first to acknowledge that significant strides have been made since the 10 years that my dad went without his diagnosis, but the spotting of dementia still remains a subjective and sometimes inaccurate art that verges between too much enthusiasm to diagnose and total oblivion to the blindingly obvious.

As awareness-raising messages about spotting the signs of dementia are refined over the months and years ahead, some sensible middle ground is undoubtedly needed.

Until next time...

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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

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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

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£55 to diagnose dementia

When the headlines first broke that GP's in England are to be paid £55 to diagnose dementia, I have to admit I wasn't surprised. Improving diagnosis rates has been the number one target since the 2009 National Dementia Strategy, and it came under the microscope again in the 2012 Prime Minister’s Challenge on Dementia. Yet, despite making diagnosis the cornerstone of English dementia policy, diagnosis rates haven't improved to the desired level.

In policy terms it's a small step to start offering financial incentives to diagnose, but in human terms it is a massive leap. It puts a value upon a diagnosis of dementia that simply doesn't exist if the clinician diagnoses another condition. It tarnishes good sound clinical judgement with the promise of payment, and it poses significant ethical and moral dilemmas.

Granted it's not a huge payment, it is made to the practice rather than the individual GP, it's optional not mandatory, and it is a relatively short-term scheme that will only last 6 months. Just think about the last part of that sentence though: why is a dementia diagnosis more valuable in the next six months than at any time before or after that? Could it be something to do with targets?

This is where we get into really tricky waters, because you and I and anyone visiting their GP doesn't see themselves as a target - just a citizen needing the help and advice of their doctor. The doctor/patient relationship is one bound by trust, and like any relationship, if the trust is lost then a breakdown of that relationship becomes inevitable.

Such a breakdown could have many significant and long-lasting consequences, not least that a person may seek to avoid seeing their GP, or any healthcare professional, about other problems that could have serious, possibly even fatal consequences in the future. Every patient needs to be able to trust in their doctor to reach a judgement about their symptoms based on the best available evidence, having availed themselves of all necessary diagnostic tools and tests, and in a holistic way that puts the patient at the centre of a multidisciplinary team. 

Even if a GP does all of that, we know that diagnosing dementia isn't an exact art. There are numerous different types of dementia, each one presenting itself differently, and diagnostic procedures (although greatly advanced) are not completely accurate. There are also other conditions, such as depression and delirium that can look remarkably similar to dementia.

Assuming an accurate diagnosis can be made, for many people there is little, if any, post-diagnostic support. You may be offered some medication, but dementia drugs aren't suitable for a lot of people (they weren’t suitable for my dad), although it is perhaps very suitable for the manufacturers of these medications that prescribers are going to be paid to diagnose more potential candidates for them.

Of course incentivising GP's to offer particular services isn't new, and the argument behind this payment is that it will enable practices to pay for the extra time and work involved in making a diagnosis. But I know that if I went to my GP and I was diagnosed with something that I'd seen headlines telling me they were being paid to diagnose me with, I would be unlikely to trust that diagnosis or that GP.

The money set aside for this payment scheme is £5m, which although it may sound a lot, in terms of overall health service spending it is relatively low. Sadly it doesn't allow me much creativity to think about how I'd like to spend it if I was the person making the decisions about dementia policy, but with due artistic licence, I’d like to suggest the following:  

• Invest in training that enables doctors to do what their profession is meant to do - use sound clinical judgement to make a diagnosis (and be just as confident about not diagnosing something because you aren't being beaten over the head to steer your diagnosis in a particular direction). The quality of each individual diagnosis should always be more important than the quantity of diagnoses being made. 
• Invest in post-diagnostic support. Models of positive support, that genuinely enable people to live well, are vital to tell the public that you can expect to live a good life after a diagnosis. Forget the promised land of cures or life-changing treatments for a moment, if you can't even offer your patient hope that they can live a life that supports them in the ways that they want to be supported then as a country we are failing big time. Good quality support doesn't make headlines - it isn't a major breakthrough in a lab or an eye-catching policy. It is most likely to involve human interaction and specialised social care – the latter of which is expensive in terms of well trained professional personnel, hence why it isn’t invested in.

So instead we focus on diagnosis. The quicker and easier it can be done the happier everyone will be, or will they? I would be the first to argue that anyone who is having troubling symptoms and seeks help should be given every available method of help to accurately uncover what is causing their symptoms. But is a higher diagnosis rate really a mark of a compassionate, supportive society that sets the benchmark for the world in how to care for people with dementia?

 

I'm not convinced it is. For me the benchmark is in how well each person currently diagnosed with dementia is living, and the confidence anyone with troubling symptoms has about coming forward to find out what is causing their symptoms. I would suggest that adding a financial reward into that diagnostic process will only make the undiagnosed person more sceptical, less likely to come forward and, should they really have dementia, less likely to accept that diagnosis, leading to them potentially experiencing other mental health problems.

 

I would also suggest that it lays vulnerable older people, especially people in care homes, open to being labelled without a robust diagnostic process, mostly because they could be seen as an easy target, particularly if they don't have a family to advocate for them. Making a diagnosis of any condition is about integrity, and above all else, putting the person first.

Because after all we are people, not targets.

 

Until next time...

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