Should health professionals be anonymous or non-anonymous online?

This is a topic I’ve been thinking about for quite some time. Today, the General Medical Council announced that doctors should identify themselves on social media. To the best of my knowledge my own regulator, the Nursing and Midwifery Council, has not yet issued a similar rule. However, I wonder if this is an indicator of what other professions are also likely to do.

Professionals blog and tweet under pseudonyms for all kinds of reasons, and by no means all of these reasons are ominous. Ermintrude2 and Dr Grumble not only use their platforms appropriately and ethically; they also write extremely well and passionately. Some people just feel more comfortable under a pseudonym, and feel more able to speak frankly.

I’ve been Zarathustra on various blogs, and more recently on Twitter, over the years. I’ve grown quite fond of and attached to my online alter ego. Look at Zarathustra’s awesome moustache! I can’t actually grow a moustache in real life. Despite being a grown man any attempts turn into something resembling teenage bumfluff. I ask you, who wouldn’t want a tache like Zarathustra’s?

Over the years I’ve noticed attitudes to social media and healthcare steadily evolving. At first it was something of a free-for-all. I remember the anarchic days of NHS Blog Doctor, Dr Rant and Militant Medical Nurse. A lot of those early blogs were expletive-fuelled swearathons, with people yelling all kinds of earthy insults at NHS managers, at politicians and frequently each other. The language was of a variety that would have a fishwife telling people to tone it down a bit.

A lot of those blogs simply aren’t there any more. In some cases, I suspect it’s because people got into trouble. Some people found out the hard way that internet anonymity can be seriously overrated, especially in the long run. As behaviour on social media started to find its way into disciplinary hearings and fitness-for-practice investigations, the professional guidance became more detailed and suddenly everyone became incredibly anxious about social media. It became a demonic creature, waving a P45 in one hand and a letter from the NMC in the other.

That anxiety is still around, but I’ve also noticed a more mature set of thinking around social media starting to emerge. The Royal College of GPs’ Social Media Highway Code, and Victoria Betton and Victoria Tomlinson’s Social Media in Mental Health Practice give good examples of this new maturity. What these publications say is, remember your responsibilities to behave ethically, but also maintain a sense of playfulness to explore this evolving medium, and work out how it can be used as a force for good.

And there’s no doubt that social media can be a force for good. Last night I joined in the #mhnursechat on Twitter, which was on the subject of borderline personality disorder. This is a difficult topic, often laden with mutual suspicion on both sides. Patients with this condition are often regarded as “difficult” or “attention-seeking”. Professionals are accused of dismissing the suffering of people with BPD, and using it as a label to stigmatise and exclude rather than provide support.

The chat was joined not only by mental health nurses but also by a number of people with BPD. For an hour everybody talked openly, equally and respectfully. We talked about what the diagnosis means to people, what helps and what doesn’t help. The feedback from participants at the end spoke for itself.

“brilliant to be able to collaborate with mutual respect for each other, a wonderful experience”

“It was such a nice change to be included instead of being ignored and spoken over so to speak”

“brilliant to see and I am glad that patients welcomed in #mhnursechat not just professionals”

“What a brilliant & informative chat. Thank you all so much for joining in”

It reminded me of some comments by One in Four editor Mark Brown.

Social media, by its nature, puts together people who would never have met.  It creates strong public voices which didn’t get there through traditional routes.  It creates stories that appear from odd angles and at unexpected times.  It makes public issues of things that might once have remained behind closed doors.  It doesn’t let things stay where policy makers have traditionally put them.

It also creates a situation for mental health where it is less ‘them and us’ and more ‘just us’.    There is something hugely satisfying in seeing someone who offline would be seen as a ‘patient’ discussing online with someone who would be seen as an ‘expert’ and both learning from that experience.

Returning to the question of whether to blog and tweet anonymously or non-anonymously, there is the matter of accountability in all this. Ironically my recent Twitter run-in with Dr Christian Jessen has galvanised my thinking on this matter. I’ve been criticised for “calling out” Dr Jessen on his online statements. Personally I don’t think I’ve done anything wrong in that regard. I think he behaved disgracefully in an extremely public manner, and that I’m entitled to criticise that behaviour. But should I be hiding behind an anonymous ID to do so? If I’m confident in what I’m saying, shouldn’t I be willing to put my name to it, and if necessary defend it?

As well as being accountable, there’s also the matter of taking credit for what you’ve done well. There are pitfalls in social media, and if I’m honest with myself I think it’s fair to say I’ve made some mistakes along the way. But there’s also things I’m proud of, such as exposing the shocking lack of regulation in the psychotherapy industry. I’m also proud of helping create and maintain the regular This Week in Mentalists round-ups, in which bloggers take it in turns to tell us about their favourite online mental health writing. I’m proud of the #TwentalHealthAwards that I started this year.

So, I guess what I’m trying to say is this.

Hello. My name’s Philip Doré . Pleased to meet you.

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World Suicide Prevention Day 2012

Today is World Suicide Prevention Day. This is a day to raise awareness and reflect on the causes of suicide and way that services and support is available or not to those who may be considering suicide.

While it is not difficult to approach the notion that suicide prevention is something that should be promoted, it is hard, at least in my mind, to detach this thought from the need for services to be provided – not just in specific mental health sectors but in broader terms because while it is easy to categorise ‘suicide prevention’ as a specific mental health need, there are those who may choose to take action to end their own lives who do not have what might be categorised as mental health problems.

So what would broader suicide prevention services look like? I think there is clearly a case for formal support (but then, I would say that) through supportive and longer term work through mental health systems. We are struggling in the NHS Community Mental Health Teams at the moment. We aren’t equipped to work with anything except the most acute needs due to decreasing funding. Fancy talk about policy pushes towards prevention mean very little in frontline posts away from Whitehall where these documents are drafted.

Waiting lists for talking therapies can be extensive and the choices between types of therapies (and for that matter, particular therapists) can be limited.

While I would argue (again, I would really) that there are practitioners who want to provide good services, it is becoming more difficult in a climate of cuts and those who pretend otherwise in the government are fooling themselves. Support has to allow time and therapeutic relationships to develop in order to understand what is needed and how. Support has to be provided extensively to family members and friends who support and care for those who have mental health needs in order to reinforce informal support networks. Personal budgets can help but only if they are implemented flexibly and with time and care rather than sped through to meet increasingly harshly imposed local authority and central government ‘targets’ and tick boxes.

My work should always be about people as individuals with wholly different needs, wishes, desires and aspirations but it feels as if it is increasingly turning into a ‘tick box’ culture in mental health services. That is wrong and it only serves to remove an element of humanity from a system that so desperately needs it.

Sometimes, indeed, often, it is not about traditional ‘formal’ services as much as promoting more social interaction and quality networking structures which can thrive  (and are often better) as peer based groups.  We have greater tools now to create different layers of social interactions now – we can build communities on the basis of interests as well as geography through and combat isolation and loneliness. If a shared interest in Dr Who or football or coffee can create communities around them, we are on the cusp of making it easier to find engaging and accepting communities to be a part of.

Perhaps though, with the greater opportunities come greater pressures to ‘find groups’ or to ‘be a certain way’. I am generally an advocate of the positive power of the internet and new communication forms to promote greater support networks and social interaction but there has been a rise in more public bullying and targeting which is the negative side of living life in the open.  I think a greater understanding of the role of those who use these new platforms negatively and to gain a greater platform for negative and unpleasant outlets has to be another focus. Why do people ‘troll’? What are the needs of the bully and what are they missing in terms of their social support in order to use negative outlets to target others?

There are many ways we can and should be looking at suicide prevention but while it remains a very important issue in mental health services, it is not an issue exclusively for mental health services.

We can all take a role in being more open, kinder and more understanding of the needs of others – we, collectively, are not able to prevent all suicide – but there has to be a wider awareness of a different paths to take – whether  formal or informal routes, they all need shoring up.

Incorporating a New Model into Healthcare Using Community Resources

This is a guest post by My Little Social Worker. 

In 1965 a man named Dr. Geiger began prescribing his patients with resources, stating simply, “the last time I checked my textbooks, the specific therapy for malnutrition was food.” Intuitively it makes sense. There are a myriad of ailments that cannot be fixed within the walls of a medical facility. A little girl cannot be relieved of her asthma if she lives in a home with poor air quality. Elevations in BMI cannot be addressed if a family is too poor to buy healthier food or is uneducated about healthy living habits.

While there are a limitless number of ideas about how to change our healthcare system for the better, they often do not consider the challenges we face before and after entering the hospital – challenges Dr. Geiger sought to address. There is little doubt that the current U.S. healthcare system aims at managing disease instead of preventing it, minimizing damage, and moving on. It minimizes damage to patients that often could be prevented if our healthcare system tried more to maintain good health instead of just managing the unhealthy.

So, naturally, I was excited when I discovered an organization called Health Leads, which completely turns the page on our existing paradigm. Their agenda is straightforward — to maintain health while simultaneously training the next generation of health leaders.

It is a simple model by which doctors can prescribe their patients with basic resources in addition to traditional medications. Instead of a “don’t ask, don’t tell” policy, physicians are adopting an ecological view that forces them to confront difficult and previously unaddressed issues. Rather than simply writing a prescription, they are asking themselves, “Can the family read the prescription? Do they have transportation? Do they have food to take? Do they have insurance to fill the prescription?”

After a doctor writes a non-clinical prescription, patients fill it by going to trained medical students in the hospital who introduce them to existing community resources for assistance things like food, housing, and heating assistance. The medical students act much like social workers, bridging the communication gap between physicians, patients, and communities. Instead of wasting time in waiting rooms, people are reclaiming this time to begin a path towards maintaining health with non-clinical improvements. After participants are referred to resources, they receive follow up calls from Health Leads to ensure that their needs are being met.

Health Leads was founded by Rebecca Onie in 1996 under the conviction that things don’t have to be “just the way they are” for U.S. healthcare. Onie recognized that there are a multitude of environmental conditions that cause illness and prevent people from being healthy; she noticed that physicians with short appointment times and high levels of stress easily overlook possible barriers their patients face in becoming healthy. She came to believe that people remain in poor health not because of the lack of sophisticated specialists or substandard technologies, but because our approach to health is so narrowly focused on immediate treatment that it discourages providers from addressing important non-clinical issues that have an impact equal to that of medical technology.

It is uncommon to find a healthcare solution that does not involve some kind of economic trade off. However, all across the country, Health Leads continues to benefit others with a non-profit model. The New York Times 2011 referred to it as “one of the most impressive organizations in the country at addressing the conditions that make people sick.” The program is not only proven to increase overall wellness of participants, but it is also providing a unique educational internship opportunity for medical students, leaving them well-equipped to participate in the clinical world with a broader perspective. The program is highly rigorous and competitive and plans to create a new generation of health leaders who will improve the way patient care is delivered in the United States. Health Leads provides valuable experience, better care, and investment in the future of health — all without increasing tax spending or placing a greater burden on our providers.

Today, there are 1000 advocates with 9000 participants all over the country connecting people with their communities to improve and maintain their health.

Onie’s basic idea is not new, but Health Leads is showing wonderful impact. Instead of using diagnostic information to treat people, providers are acknowledging the big picture while utilizing an eager team of students who are unencumbered by clinical responsibilities. This is a model of social innovation we should continue to encourage and replicate across the country.

This article is a guest post by My Little Social Worker, a collection of journals offering insight into the field of social work, advice for students, and inspiration. Follow My Little Social worker on Twitter at @MyLittleSWer.

Broadening access to Independent Mental Health Advocates

Support each other

The statutory role of the Independent Mental Health Advocate (IMHA)  grew from the 2007 amendments of the Mental Health Act in England and Wales (with a start date of 2009).  IMHAs have particular status in terms of rights to information and access that other advocates may not have within Mental Health services.  Currently commissioned by PCTS, from 2013, Local Authorities will take over commissioning of IMHA services and the right and access to good services is intended to be a safeguard within compulsory mental health services.

Last week, Community Care reported on a study conducted at the University of Central Lancashire about the use and understanding about the use of Independent Mental Health Advocates (IMHAs)  among Mental Health Professionals in England. The study has (not, I suspect, coincidently) come at a good time for the change in commissioning arrangements and a look at where things are and where they should be going.

The article itself draws attention to the conclusions that

Some professionals saw advocacy services “as challenging, even irritating and inappropriate”, the research found. One professional told researchers advocates were “amateurs meddling” and a “bloody nuisance”. Others, particularly approved mental health professionals (AMHPs), supported advocacy “but had little or no direct experience” of service users using it.

As a Mental Health Professional (and AMHP) who has had some experience of uses and referring to IMHAs, I was disappointed by this initially. Particularly the terms with which advocates were mentioned. ‘Nuisance?’, I hope so. ‘Meddling?’ well, why on earth not? Surely being a nuisance to professionals and meddling is exactly what a decent advocate should be doing – however I would find the distinction between so-called ‘mental health professionals’ and ‘amateurs’ as advocates offensive and an indication of scant respect. Respect at every level in mental health services, social services and health services has to exist.

Community Care in a blogpost have put together some of the quotes pulled from the report by social workers and AMHPs in relation to advocates which makes interesting reading alone.

My experiences have been mixed to be brutally honest. Working predominantly with people with cognitive impairments which are significant and may not be able to instruct an advocate, I’ve found our IMHAs who have come from a mental  health advocacy background, have been less than understanding of the need for non-instructed advocacy skills. I have been told following a referral I made, that they would not work with ‘Mr Brown’ because he has an advanced dementia and they were only able to do what he asked as his advocate.

I felt some of the attitudes I’ve seen by a couple of our IMHAs towards older adults with cognitive impairments have been less than positive – and I do feel quite protective towards my client group and want to ensure equal access. If only, I have thought to myself on many occasions, our IMCAs (Independent Mental Capacity Advocates) were also our IMHAs (I can’t praise our IMCAs highly enough – even (or perhaps especially) – when we disagree!).

I am always (in a nice way, of course) a little jealous of the advocates I work with. I think their job has a lot more credence than mine in some terms because while I can advocate for my clients to a point, there’s a point at which I am a part of the oppressive systems that need to be advocated against.

I understand that and respect it. I’d certainly not see advocates as any less ‘professional’ than other members of the team I work in. There has to be a distance though – which doesn’t need to stop us being friendly, personable and pleasant to each other – but does demand that sometimes we will be coming from different angles. That’s important to protect the rights of those being advocated for.

The report itself can be read here.  It explains the context of. It explains that access to an IMHA service which should be offered to everyone who is subject to a detention over 72 hours or a Community Treatment Order/Guardianship – is sparse which particular under-representation in the following areas

There was a strong consensus that those who need the IMHA service the most,access it the least. Specific groups of people that may be under-served by IMHA
services are:
 People from BME communities
 People with learning disabilities
 Older people, with dementia
 People who are hearing impaired or deaf
 Children and young people
 People on CTOs
 People placed out of area

And the issues which have coloured my own personal experiences of using IMHAs was mentioned in the report

The development of IMHA services is based on a model of instructed advocacy provided by mainstream advocacy providers. This may inadvertently disadvantage qualifying patients who have specific needs including people from BME communities, older people, children and young people and those with sensory impairments ..

Furthermore

There was little evidence of commissioning based on needs assessment and equality impact assessment and there was evidence in the case study sites that specific needs had not been considered. In particular, gaps were evident in relation to people from BME communities, people with learning difficulties, older people, children and young people. Further, it was evident that generally service users, particularly qualifying patients, were not being directly involved in the commissioning process or in
monitoring contracts.

So it would be unfair of me to lay the blame at the lack of capabilities of particular advocates and more on the commissioning process which sees ‘Mental Health Patient’ as a block group of people with similar needs and commissions accordingly.

The report makes a number of useful recommendations and is a good read for anyone involved and engaged in the provision of mental health services in England and Wales, whether as a professional, user, advocate, carer or commissioner.

The role of the advocate was strengthened by legislation and it is important that the benefits are not lost. I have seen such incredibly useful work done by advocacy services locally that my main gripe is that there should be an equality of access and opportunity for all who are treated compulsorily by mental health services in society.

I want more ‘nuisances’. I want more ‘irritants’. I want more challenges.

That’s what an advocacy service should be about.

pic by sparkypics at Flickr

Carers Week – More than Words

Building Blocks of Art
‘Carers Week’ begins today. While the ‘official theme’ of the week is ‘In Sickness and In Health’ with a focus on the health of carers, I would provide my own theme from my position of having worked in social care for a fair few years as ‘more than words’.

Carers’ need more than accolades in order to feel supported and be supported properly. We need to be able to provide resources and that needs money.

Over the last 15 or so years, there have been definite changes in the status of ‘carers’ in social care organisations.  We have rolled out ‘Carers Assessments’  and have been able to provide services for carers directly as a result of new legislation. While we  assess the needs of carers – what we don’t have and where the disconnect exists – is a duty to provide services and nor national criteria about where a service should be and must be delivered.

The problem I face all too often is revolves around carrying out Carers’ Assessments (of course there is a target for these) but not being able to actually provide anything as a result of them. To which the obvious question I am asked is ‘Why do them if they only provide information to the Local Authority?’.  My local authority, fortunately and for now, at least, is fairly generous with carer support and direct services but this is by no means universal.

Mother watches over

I have been fortunate to see and provide some excellent services through direct payments made to carers and in a lot of ways, the services I have been responsible for providing as direct payments to carers have been a lot  more successful than some of my experiences with direct payments more broadly. I am able to encourage assessments with the possibility of a direct service provision as a result but I know this is by no means universal.

Assessments in themselves can be useful if they are conducted well and sensitively. Sometimes allowing a carer to have the space to discuss their own needs and explain fully the care they are and do provide and the effects that this has on their own wellbeing/goals and lives can be valuable – however there comes a point when this has to be acknowledged in a more ‘real’ (and yes, that can mean costs) way than smiling and nodding. More than words.

I’ve also seen an increase in the ‘posting a carers assessment out’ style of assessing which can lose some of the subtleties gained in a conversation and a visit. Of course, not everyone wants an assessment because the language and the questions can be formalised and particularly we get the ‘I’m not a carer, I’m a spouse/child/parent’ response but I’d counter that’s something that can be addressed by a change in the way of ‘paper assessment’ and the language and discourse models that exist around social care. Why can’t we be more flexible regarding what an assessment actually is? Do we have to ask the questions on the form?

We give, others receive but that’s a tired model – particularly in relation to carers who give us, as a service and organisation – much much more than we can ever give them.

So why is it reduced to a paper assessment logged onto a computer database? Because that allows performance indicators to be met.

My ideal service would be more flexible about the ways that assessments are compiled and would allow much more for free text and less on box ticking. Box ticking can help some clarify but it by no means captures what role caring plays in all lives. ‘Caring’ is not uniform. There are a myriad of needs and a myriad of ways to both communicate this need and for support to be delivered – or there should be. If people want boxes to tick, by all means provide them but if they want open space to discuss or write or record what and how they feel about their role and what might help, then allow that too.

We also (in social care) need to work on our assumptions a lot. Families exist in different ways and have different histories. There may be many reasons that don’t need to be disclosed about caring may be more difficult in particular situations and assumptions can be very damaging.

The new Adult Social Care White Paper is imminent, apparently. There needs to be a commitment not just to assessments of carers but of delivery of services and support to carers. More than words.

While the government talks about ‘respite’ and the need for breaks, I’d argue that is essential but while the provision of services is being cut and there are fewer, more distant places to offer respite the realities will remain as far from the government planning as they are at present. Capital investment and investment in decent staffing in homes that offer respite consistently would help. Clear explanations about entitlements and potential costs would help. Services that speak to each other would help. Pooled budgets would help but the easy words come thick and fast. The solutions can’t be found by words alone.

The current system as it exists relies on carers significantly to ease the burden of cost of the social care system. This needs to be more transparent in terms of publishing details of how indicative personal budgets are arrived at and the amount that is ‘saved’ by a carer. If some of these ‘savings’ (not even a minute proportion – but some ) is ploughed back into effective and personalised support with professionals who are able to access and feedback good, local information and provide support and training to carers where they want it the savings over the long term would be much higher.

The cost of poor support for carers is much much higher than the cost of good support – but in these times of ‘belt-tightening’ it can be forgotten while we reach the goals of short term savings.

It’s a lesson that both the NHS and social care systems would be mindful to heed.

In order to support carers ‘In Sickness and In Health’ the government, the organisations such as the NHS and local authorities, employers and communities needs to provide ‘more than words’.

Images by W4nd3rl0st at Flickr and Sapphiren at Flickr

Integration and Disintegration between Health and Social Care

Broken
There has been a lot of talk about the need for greater integration between health and social care. It’s been happening for as long as I’ve been in social care.

It seems obvious to me anyway, that as long as there are different pots of cash between health and social care, the proverbial ‘buck’ will continue to be passed and the differences in the funding systems has potential to lead to great distress in terms of services delivered.

While NHS services remain free at the point of delivery, social care services are means tested and chargeable and the line between ‘health’ needs and ‘social care’ needs relating from health needs can be very complex.

The answer is integration. Integration of budgets and integration of costs. Integration so that savings made by preventative work today in social care are evidenced in the budgets of the health service – and vice versa. A poor and speedy hospital discharge in order to protect hospital beds may result in a excessive needs in relation to social care. A lack of provision of social care may lead to greater health needs. It seems obvious.

But this is not new. However, in mental health services we possibly have some of the highest levels of integration between health and social care – for the moment.

As a local authority social worker, I (with some of my colleagues) am seconded into the local Mental Health Trust, working alongside NHS employed colleagues.

The position of embedding social workers in NHS trusts has been a long one and was needed for a number of reasons. It may be that there is a genuine feeling that embedding social workers in Community Mental Health Teams improve outcomes for users. It is a move away predominantly medical models of mental health and an acceptance and understanding that social models of illness and disability have a place around the ‘table’ in a multidisciplinary team.

I genuinely believe that as a seconded member of staff, I have a slightly different ‘take’ on some of the hierarchies that seem to exist within the NHS structure. I rather enjoy challenging doctors and I think most of them quite like being challenged too – it’s all respectful of course but from a basis of a different branch and approach of expertise. While understanding that all members of a CMHT, whether doctors, nurses, occupational therapists or psychologists, can work towards social models – the training of a social worker is quite unique in this setting and adds something very different to the mix of the team.

The other reason that led these integrated teams to exist was related to the provision of ASWs (Approved Social Workers as they were) under the 1983 Mental Health Act (pre 2007 amendments).

Local authorities were responsible for employing  and authorising Approved Social Workers in their areas. This led to the ‘secondment’ system working.

However with the 2007 amendments the new AMHP (Approved Mental Health Professional) role did not need to be employed from outside the NHS. So with the NHS being able to employ their own AMHPs and AMHPs no longer needing to be Social Workers, the absolute need for secondment waned and some Trusts have seen it as an opportunity either to TUPE the social workers into the NHS Trusts and employ them directly – or to ‘disintegrate’ teams and move Social Workers back into Local Authority Teams. This, you see, both can save money for LAs who have been paying for the social work staff in these Mental Health teams while not entirely convinced they are getting ‘value for money’ in terms of the new targets they have around ‘personalisation’ – particularly as take up from mental health users has been traditionally poorer than take up in some of the more ‘traditional’ local authority adult teams.

The problem with disintegration is that it is both counter-intuitive in terms of the less concrete targets that might exist and is potentially counterproductive – we should be working together in the most seamless way to provide and deliver services to users who deserve better systems which work. We need to work in Community Mental Health Teams which have a strong dose of social work-trained professionals because we bring a unique perspective to the role and can temper some of the push towards overmedicalisation  or pathologising of mental health.

So where now? Some local authorities and NHS trusts are ‘divorcing’ while the rest of the sector glibly bangs drums about ‘integration’.

Personally, it feels like the move towards and away from integration can only be won on the arguments of cost in terms of cash.

Unfortunately there’s an ethical consideration about cost in terms of better care, better treatment and better delivery of services which is being lost.

Social Work and Health need to integrate not disintegrate – in all areas but the implications of the divorcing that is happening in mental health needs to be pushed to the front of the agenda.

Researching and Improving Dementia Services

Memory

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

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

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

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

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

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

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

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

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

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

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

I hope to see, alongside better funding for research

1) Better support for family/friends as carers

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

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

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

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

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

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

The triumph of hope over experience.

photo by Ruth Flickr