World Alzheimer’s Day 2012

Purple

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

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

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

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

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

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

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

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

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

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

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

Some good resources to read about Alzheimer’s and dementia

Modules from OpenLearn (Open University – free modules)

Fisher Center for Alzheimer’s Research Foundation

Alzheimer’s Society UK

SCIE Dementia Gateway

Dementia Resources – NHS Health Scotland

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

photo by Allie’s Dad @ Flickr

Keeping up with Research while in Frontline Practice

Gizmo studies Maritime Law

Being based in an ‘integrated’ team alongside NHS staff, I have been frustrated at some of the differences in attitude towards conducting, assessing and discussion of current research as a frontline practitioner. However, this is a better situation to be in than when I was working in a social work team. At least now, I’m aware that there is a difference and by not being given particular time and space to access research articles and journals, I’m being impeded.

While I see colleagues being actively encouraged to undertake research projects, there are no possibilities ever raised for social workers to work in similar ways. This may be wholly about work culture and attitude to research by employers or it may be about professional attitudes to the importance of being updated regarding research but there is a noticeable difference.

I try to remedy this myself and while there will not be time to actively carry out any of the research projects I ponder about – there is nothing as frustrating as seeing the same evidence being published in different ways that tells us nothing that will actually make a difference to the way we practice – I limit myself to literature reviews and trying to keep myself updated with journal articles. Sometimes we discuss them as a team – sometimes I collate the information myself and keep notes on the articles I find. I may even publish some of these literature reviews as blog posts in the future if they would be useful to others.

I used to make considerable use of the British Journal of Social Work but seeing as my access to research literature is limited (possibly like many local authority social workers) to the SCIE (Social Care Institute of Excellence) Athens scheme and they no longer are able to subscribe to that journal, I have turned to other journals to find and source information that is useful to me. It makes me think less of a journal that would play political games with allowing access or not but it is a sharp and important lesson about the need for practitioners to have good access to information.

I have though through the SCIE scheme found

Aging and Society, Journal of Social Work Practice, Practice and the Mental Health Review Journal have been particularly useful for me. It’s worth checking out the resources available via SCIE as any social worker in England and Wales working for a local authority with a gov.uk email address can gain access to them.

The College of Social Work also enables Athens access for members if the email address is a problem but I believe the list of resources available are the same and there is still a block on the British Journal of Social Work being made available.

SCIE provide useful resources generally and RiPfA have some good outlines and policy updates which can be an excellent way to start discussions and conversations in a local service area. I don’t know much about Community Care Inform as it focuses on Children’s Services but it may be something useful if there were a parallel type service for adult social workers – indeed, I’d be happy to pay, individually, for just such a service.

As an AMHP (Approved Mental Health Professional) and a BIA (Best Interests Assessor)  it is crucial that I am constantly aware of both the latest developments in terms of case law and the new interpretations as they arise – I’d say that it is necessary for anyone working in Mental Health to have a good awareness and understanding of current interpretations of the Mental Health Act and the Mental Capacity Act.  I find the 39 Essex Street Court of Protection newsletters very useful to ensure that I am aware of the latest developments. although I do attend both formal and informal training and workshops regularly which focus specifically on case law in these areas.  It is the one area particularly that I find social media enormously helpful – not just in terms of awareness of cases as they arise but as opportunities to discuss them.

Even in the toughest, busiest teams we have to take responsibility for our own learning and ensuring that we do not leave the information and research evidence to pick up cobwebs in the ivory towers of academia. Being a practice educator helps with this as I encourage students to source and discuss recent, relevant research with me in supervision but also try and find some useful and interesting articles myself to discuss.

The benefits of being up to date and knowledgeable about current research are that firstly it encourages competent practice – I don’t think it’s possible to work in a silo of information and evidence that may have been presented when you (we) last studied formally, even if that was a year ago. Things change quickly.

An awareness of research can affect policy and the development of services – I’ve been able to feed into consultations both locally and nationally using references and information that I have gleaned from recent papers and it has added a more authoritative quality to my input. I’ve also been able to discuss and reflect in my own supervision sessions some of the disconnect between what might be positive ways of organising services and the ways things happen in practice.

It has also allowed me to garner a louder voice within the system in which I work. I can build a professional reputation as someone who will invest in my own learning and progress and when I have concerns about the way the organisation might be approaching something, I can back it with references, I’m far more likely to be taken seriously.

We want to create learning organisations but they have to be filled with learning practitioners and standing still is not an option. It doesn’t have to take significant amounts of time although it can if we want it to. It can be about reading through an article with an interesting title and reviewing it mentally before deciding.

One of the chief things I’ve learnt is that just because an article is presented in an academic journal, doesn’t mean it’s well-written or useful. We shouldn’t idolise academics as there is as great a variety in quality as there is in practitioners but there is no doubt that having an active interest in current academic research and debate is the next best thing to being able to be actively engaged in contributing to research.

Perhaps that’s the next step – one day I’d like to see more effort all round to integrate active research into practice but in the meantime I’ll make all the effort I can to ensure that my practice is current and informed.  It helps keep me hopeful and it helps keep me interested.

I’d love to know if anyone else out there has other information or resources that they use to make sure they keep up to date with research while practicing. It’s a vital way of keeping our knowledge fresh and active.

pic by jmatthew3 at Flickr

Rethinking Care Funding

An interesting headline in the Independent caught my attention  this morning.

‘Affordable old age – U-turn on money for elderly care’

So the  story develops, in the Independent, along with other papers that the government (via a ‘senior sources within both coalition parties) that the Dilnot proposals to fund adult (note – adult, not ‘elderly’) social care in England.

Dilnot’s ‘headline’ proposal was that there should be a cap on the limit of personal liability for the cost of care fees and this development suggests that that limit may well be set at £35000.

The article explains

A Whitehall source said: “They’ve come to the conclusion they’d be mad not to do it. It’s all about the legacy. It means both the Conservatives and Liberal Democrats can turn round in 2015 and say: ‘We sorted out social care. Because of what we did no one will have to lose their homes to pay for nursing home care any more.’ That’s a pretty big achievement – and would appeal to both sets of voters.”

Now this narrative of ‘losing homes to pay for nursing care’ is a basically incredibly simplistic for a start as it doesn’t really take into account the conditions that currently exist about when that may or may not happen. It does, however, grasp on the ‘tabloid narrative’ of the terror of the home owning generation that they might actually have to use some of their assets to pay for the high cost of care.

You see, I have a problem with Dilnot and care caps while seeing it is politically pleasant. Care has a significant cost.  Caps are good politically but there will need to be significant investment of money and the ‘cap’ is solely in terms of ‘care costs’ and wouldn’t cover the ‘hotel costs’ of residential care.

Protecting inheritances though, fits well into the coalition narrative and without doubt, there’s a need for the basis of social care funding to be rationalised. I hope the coalition move beyond the ‘selling homes to pay for care’ narrative that’s overplayed and under-understood.

See, the other interesting little tidbit of information in this report from the Independent is that

The Treasury is expected to argue that the plan should be paid for out of the general NHS budget. But that could create problems for Mr Cameron, as Labour could argue that funding care was robbing hospitals and frontline services of cash.

This will add significant pressure on the NHS – however it does potentially free up the local authorities from some funding responsibilities that they already have. This remains a worry. What I need to see to be satisfied with this proposal is detail about where and how the money is going to be made up when the cap is in place.

A move on Dilnot though (which is about more than caps – believe it or not and you wouldn’t necessarily if you just read the headlines) would be a definite positive so I’m not knocking it.

I just wonder about headlines that talk about ‘affordable old age’ – affordable to whom? Sometimes affordability comes at a cost. I want us to achieve quality care for all those who need social care input and it will cost. It’s a matter to consider where the burden of that cost will lie. As long as the money is extracted from a stretched NHS budget without further injections of cash, I can’t be as overjoyed as I would like to be about this u-turn.

I’ll retain my sliver of cynicism until we have more details.

Reporting on Deprivation of Liberty Safeguards

Skyline

If there’s one part of my work which is bound to cause confusion and misunderstanding, I’d say it’s the ‘Deprivation of Liberty Safeguards’ or DoLs as they are shortened to.

DoLs is a complicated corner of legislation that covers particularly those people who lack capacity to make decisions in relation to their care, accommodation and/or treatment (depending on the particular case) who are being ‘deprived of their liberty’ in a care or hospital setting. According to Article 5 of the European Convention of Human Rights, there is a residual ‘right to liberty’ so when someone is ‘deprived of their liberty’ (whether by being detained under the Mental Health Act or in prison) there has to be a legally prescribed process to appeal this and to ground the decision made. The ‘Bournewood Gap’ whereby there was no procedure to deprive people who lacked capacity to make decisions about residence/treatmetn/care was thus ‘closed’ by the introduction of these ‘Deprivation of Liberty Safeguards’ which provide a legal framework to authorise (and appeal, in legal terms at least) these orders.

To my knowledge, the majority of these orders particularly would be made in respect to people with learning disabilities or moderate to advanced dementia.

So yesterday the Department of Health reported produced it’s Third Annual Report (pdf) on data provided in respect to the amount of DoLs across England and the Independent published an article about the ‘huge spike’ in applications made – a jump by 27%.

There was some discussion last night on Twitter about whether this was ‘a good thing’ or not. The article rightly identifies the mess inherent in the current rather confusing and potentially inaccessible system, saying

DoLs are notorious among lawyers, care and health professionals for being overcomplicated and deeply misunderstood. Both the Care Quality Commission and the Mental Health Alliance have criticised the legislation with the latter describing the entire DoLS system as “not fit for purpose”

I’d join in with the criticism to an extent. The current system is overcomplex and the lack of a clear path through the system for service users and for family members is notorious and verging on oppressive. The routes of appeal particularly are unhelpful and challenging DoLs authorisations is a complex process. The other difficulty is that there is a lot of variance in definitions of what ‘deprivation of liberty’ means. This is something that courts reinterpret frequently however thinking back to the safeguards as exactly that – safeguards – mean that by the context of them narrowing we are at risk of providing these safeguards to fewer people.

However regardless of the complexity of the system, these ‘safeguards’ are not bad in themselves. They provide an extra layer of scrutiny into some of the care and treatment of those who lack capacity and can be a potentially very strong safeguard.

The problem is, well, one of them anyway, is that the care home or hospital where the deprivation of liberty is or may be taking place have to make the referral themselves.

Back to the Independent article, it explains that one of the problems is the massive discrepancies nationally and I would concur with this. This is what happens when ‘deprivation of liberty’ is poorly defined.

So

A breakdown of the figures show that whilst a local authority like Leicester made more than 400 applications last year, Reading only made one for the whole year whilst Hull made just three.

This seemed staggering to me. I am astonished/sceptical. Is it really possible that there has only been one person who is in Reading (or for whom Reading is responsible in terms of financing their placement) who was deprived of their liberty in a case or hospital setting over the course of an entire year?

Reading’s response is interesting in itself

A spokesman for Reading Borough Council gave no reason for why they had only authorised one DoLS last year but added: “We advise and support care homes to support vulnerable people, and only use DoLs as a last resort measure.

Well yes, but this more shows a lack of training and advise regarding legislation rather than something that Reading should be proud of. Because to me, it screams that there are potentially a lot of ‘unauthorised detentions’ knocking around.

The problem is that noone is likely to pick up on this.

The Deprivation of Liberty Safeguards are not ‘bad’ per se. They are safeguards and when they kick in, they require two independent assessors to provide a report explaining the terms of the deprivation as it exists, a limit to it and the reasons why it is in that persons’ best interest.

How could they be made better? (and do bear in mind, I’m venturing a little into ‘fantasy land’ here).

  • Streamlining the appeals process so that it is on a par with rights to appeal to tribunals under the Mental Health Act
  • Provide a mechanism to trigger referral that does not depend on the care home/hospital
  • Better define what Deprivation of Liberty is
  • Provide a regulation framework whereby regulators and inspectors are actually aware of ‘deprivation of liberty safeguards’ and the relevant legislation

Will that happen? Unlikely because there is little resourcing available but however much the phrase might make one shudder with confusion, the Deprivation of Liberty Safeguards are important.

They protect the rights of those who have little recourse and for whom some of the most important decisions are made by staff in hospitals and care homes and by local authorities. These need to be scrutinised and considered but the complexity of the system has been its undoing.

The presence of a DoLs authorisation in a care home is not a ‘bad’ sign. The absence of any (or few) DoLs authorisations in an entire local authority is not a ‘good’ sign.

Poorly administered or misunderstood DoLs’ authorisations are very bad though however used properly, it is very important to remember they are safeguards.

Reading’s pride at the existence of one authorisation over a year is not really something for them to be enormously proud of because I worry about the existence of unauthorised deprivations of liberty – not just in Reading (where obviously they advise and support care homes so well) but in all the care homes and hospitals in the country where those for whom Reading may be responsible are living.

Sometimes it isn’t as simple as saying ‘rising authorisations’ are bad or that they are ‘good. It’s about the subtlety of implementation and review.

Most worrying is the variation. If anything points to complex law and poor information sharing – it is that.

Something to learn for local authorities around the country, I hope.

And hopefully a lot more work for those who train people to understand and use the deprivation of liberty safeguards properly!

pic by garryknight Flickr

A look at ‘Caring for our future : reforming care and support’

paper stack 1 SQ BW 500X

A rapid chase through the Care White Paper

The government published it’s long overdue Care White Paper yesterday. There’s been time for a significant amount of coverage to push through to the media and I don’t want to repeat information that’s out there but rather provide a response/analysis from where I am and where I see it. There is a good summary on Community Care though.

It’s a hotch potch of a document. The words are pretty but there’s an underlying tone of ‘saving taxpayers money’ which shines through from every good intentioned statement. Saving money isn’t a bad thing but I wonder how much the intention is to change the way the market in care is delivered in line with the NHS Bill and how much is to actually change the philosophy behind the process of care. I doubt the government’s good intentions.

The White Paper divides into eight chapters. So I’ll follow that pattern in my review of them.

Chap 1: The Case for Change

Here, the paper itself sets out the current difficulties in the system as it is at present which is reactive to crisis rather than focused on prevention. I can’t help feeling a little cynical in noting even the current system wasn’t intended to be this way, but has developed as such due to the pressures on funding.  The government line is to prove the point about crisis response but that’s not really been the agenda all the time.

Believe it or not, there was a time we met ‘low’ needs and while accepting there is a financial limit, the demonisation of the system is hardly a true reflection of what was envisaged and more should be learnt about the ways that systems imposed develop into a ‘race to the bottom’.

So the paper suggests that the answers will be found by providing more services sooner in the process of ageing or a disabling condition.  We will have more support for carers and will be promoting communities to provide support within themselves.

People need more information, without doubt, and that will be provided. That’s hardly revolutionary but too much has been down to local differences – the old ‘postcode lottery’ arguments. This will be clarified so people can move around the country and know what they will be able to expect.

Interesting that the ‘opportunities from reform’ all seem to revolve around financial benefits. It’s a valid benefit and opportunity but an interesting angle so

‘Promoting people’s wellbeing and independence’ will ‘limit future demand for care and support and help to ensure taxpayers’ money is used for effectively’.

Support for carers will enable them to ‘remain in the workplace’ which will ‘support economic growth’. So THAT’S why they are so keen to support carers – don’t want anyone to think that ‘caring’ without pay for a family member isn’t a valid and essential economic contributor.

and ‘Supporting businesses to grow’ – which is maybe what choice is all about.

I’m not against these agendas but I think the framing in economic terms is very very interesting.

Chap 2: Our vision for care and support

Understandably and quite rightly there is a high proportion of ‘control’ wanting to be distributed from top down to users in this section of the White Paper which is all well and good. It’s been (rightly) the movement of travel and needs to go further. As someone who works with people who have not been able to benefit fully from the ‘choice and control’ agenda, I was particularly looking for things that would help and support the people that I work with here.

There’s a lot of focus on promoting communities in being active and enabling to those living in them. There’s a need to promote better information streams – quite rightly – the system is enormously complex and I spot a little line on page 19 about ‘supporting the transformation of the social work profession’.

So the role and place of the local authority to provide care and support will be changing as it says

‘instead of purchasing and providing care and support, authorities will increasingly be expected to take a leadership role in a local area’. That should be interesting.

Chap 3 ‘I am supported to maintain my independence for as long as possible”

So in looking at prevention of isolation and needs the White Paper turns to communities to look for support, quite rightly. There’s a lot of potential here and social isolation is specifically targeted with some wonderful local models explained in terms of the way they work with isolated people to bring them into communities.

Not everyone wants to be a part of a community and there are some people communities tend to be less eager to support but it’s a great initiative for some people and there will be a lovely new Outcome Framework which will identify measures of loneliness for us to work on while local authorities managers and accountants look at ways they can meet targets at low or no cost.

Commissioners will be ‘encouraged’ (whatever that means) to draw on community support networks rather than moving people into ‘formal’ services. I read that along the lines of finding services that are provided at low or no cost but perhaps I’m a cynic.

There’s a line here too about social work pilot schemes which will  ‘liberate’ (I’m VERY suspicious of the word ‘liberate’) social workers from case management. It looks like a push towards more community based social work but I have some concerns. Firstly, case management is only bad if it is implemented badly as a process rather than as a collaboration. Poor case management can have an enormously detrimental effect on someone.

I’m not convinced by social work pilots but will wait for the outcomes of these pilots to see before I make a final judgement. I like the idea of more community work but am worried at what cost it may come in terms of privatising delivery of service and moving responsibilities for provision away from a democratic mandate.

I do like the idea of connecting care homes with their local areas. That is enormously positive and where I’ve seen it happen locally, it has made a big difference. It does seem like a lot of ‘use volunteers’ as the answer to problems but honestly, that’s not a bad thing where there are volunteers. I just wonder if all communities will be as engaged and where there is such a great reliance on community to provide support, what will be done in those areas that aren’t as supportive.

As regards housing, there will be significant investments in housing for older and disabled people. I hope this will encompass people in mental health services and is not limited to those with physical  health needs. There is a muddle over extra-care sheltered accommodation which is described as a way to meet low level needs but also as an alternative to residential care. Oh, I mean a ‘cost effective’ alternative to residential care. Missed the key point there.

Chap 4 ‘I understand how care and support works and what my entitlements and responsibilities are’

Information, information, information. It’s crucial in order to make choices and the government sets out ways, particularly websites, that will provide more information about services and facilities to all rather than just those eligible for them.

Interestingly the NHS 111 number will roll out support for social care. I wonder how this will work as a national helpline when provisioning is so different locally and there will be an extension of services like NHS Direct and NHS Choices into the social care sphere. Look forward to seeing that. I genuinely hope it works.

Local authorities will also be obliged to provide more information online but also in other formats, to those looking at services and providers but it looks like there is intended to be a default move online for many access points – including self assessments online as ‘they provide a better customer experience’. I wonder how this marries with the issues around the digital divide. There will be paper and telephone options available at least.

There will be a national eligibility framework and it seems (although this will only be confirmed later) that it may well be set at ‘substantial’ under current FACS guidelines although there will be a move to a new framework of assessment and eligibility.

People will also  have more options about who assesses them.

‘Our ambition is for many more providers to offer assessment services’. Good business opportunities there and a role for the social work pilot schemes.

Carers will have an entitlement to assessment (which exists) and to the provision of services (which doesn’t at present). I’m glad to see that.

Chapter 5 ‘I am happy with the quality of my care and support’

There’s an interesting diagram on this chapter on page 38 with circles of ‘roles and responsibilities in care and support’ around the ‘service users and carers’ at the centre, with Government, Commissioners, Providers and CQC around them. Interesting that there is no place for social workers. I expect we come into ‘commissioners’ but sad that the profession doesn’t seem to have a place around this diagram and is not even mentioned.

There is talk of better regulation by the CQC with inspections annually (scandalous that they were ever anything but in my view).

Looks like they’ll be a return to some kind of rating system too. Strange that just disappeared.

Statutory Safeguarding Adults Boards will be convened by local authorities with police and NHS organisations inputting to them. There will be further consultation on powers to access someone who might be at risk of abuse or neglect.  Personally, I’d like to have seen more on safeguarding.

Commissioning on quality is emphasised (good) and there seems to be a desire to look at some kind of outcome model to judge this. There’s also an acknolwedgement of the failing of some private care homes such as Southern Cross and

‘Local authorities have a duty to provide accommodation to anyone – publicly or self-funded – who has an urgent need for care which is not otherwise available’ and noone will be left homeless if a provider were to fail.

I don’t doubt that would be the case anyway but more public protection for private companies failing can only lead to additional costs.

Chapter 6 ‘I know that the person giving me care and support will treat me with dignity and respect’.

Here there’s an emphasis on building skills in the social care sector. I don’t believe people go into this field of work to be oppressive or uncaring but the system dictates it and a bullying workplace leads to poor and dangerous service delivery to people who have higher needs.

The government claims to be committed to the plans of the Social Work Reform Board and that the College of Social Work will play a heavy role in improving standards of education and training in social work in universities.

The White Paper supports the position of Principal Social Workers in Adult Services and part of that role will be coordinating feedback from frontline practitioners. I look forward to having one locally as I have a lot to feedback.

Chapter 7 ‘I am in control of my care and support’

Ah, personalisation, that bittersweet word which means everything and nothing. Everyone entitled to care and support will have a personal budget – I genuinely thought that was already on track and didn’t think it was anything new. And look

‘We will push further with our ambition to support as many people as possible to enjoy the benefits of a direct payment’.

I hope that support is extensive and looks beyond the current models which have served some exceptionally well but many others very very poorly.

I won’t mention the ignorant way that advocacy is included in the White Paper which evidences a lack of knowledge by those who wrote the paper but will merely reference Martin Coyle’s (from Action for Advocacy) blogpost which says it all.

There’s some more in this section about integration between health and social care which is becoming more distant in practice rather than more evident.  Use of the term ‘care coordination’ is confusing as it is a generally used term in mental health services and has different technical meaning to the way it is used in the White Paper in terms of physical health. That has already caused us many confusing conversations locally as to someone having two care coordinators – one for physical health and one for mental health – which kind of proves the point about duplicating work and having unfathomable systems. The terms should really be clarified and separated if necessary.

Chapter 8 ‘Making it Happen’

A draft bill was published alongside the White Paper. I haven’t read it yet. I wonder that some organisations seem to have thrown their lot in wholeheartedly with the government which makes me a little nervous. I want to support positive change but I don’t want to be blinded by good intentions and words that lead to little that changes the lives of those who have the most need for support.

Interestingly the ‘financial context’ is stuck at the back of the White Paper like a growing tumour. There are mealy mouthed words about the government putting money into social care but while taking away in the other hand, from local government, they have contributed directly to the ‘crisis management’ only model that they criticise.

Conclusion

I see little if anything revolutionary in this paper. I see nothing that explains a change in the direction of travel and means of delivering social care. I see some positive signs and some acknowledgement of difficulties but we were moving down the path of personalisation at a rate that it could only continue. While there was mention of personal budgets for residential care, I saw nothing about ISFs and developing ways of promoting choice for those who are excluded from communities and who may lack capacity. I saw nothing about changing legislative frameworks. I saw a lot of gaps, not least, the massive funding gap.

Nice words though, fluffy and helpful and a lot of the language of ‘choice’ (where possible), ‘community’ (where free) and ‘market’.

These things are always filled with the right words. I think a lot of opportunity to restructure and rethink adult social care has been lost although there are some springs of hope – there aren’t by any means enough.

Pic by wintersoul1 at Flickr

Care White Paper – pre-publication thoughts and hopes

Cash

Finally the Adult Social Care White Paper will be published today. There have been a number of ‘leaks’ and there is a fair bit of information we know already. I wanted to collate what I know is coming with some hopes about what is contained.

Funding

We’ve known since the weekend and suspected for far longer that the bulk of the Dilnot recommendations will be shelved. The government while supporting the idea of a cap have been unable to find the money ‘in the pot’ for it and so any significant changes to the funding systems are going to be put on hold until the next Spending Review which conveniently will make it too late for anything to be done in the Parliament.

Care Home Fees

Oh look. The Government have worked out this REALLY CLEVER plan to allow people to pay for their care home fees after their death. Oh, so that would be completely different from the system already in place that allow people to pay.. um.. care home fees after their death.

Well done, clever little government, you’ve managed to bring out as a headline something that is already fairly standard practice across local authorities in England. Oh wait, you are now allowing the local authorities to charge interest.

I don’t understand how selling a home after death is better than selling it during a lifetime if it is still being ‘lost’ to potential inheritors. Remember, the value and asset of the home is discounted if there is a spouse or dependent still living in it. Making the process all about the inheritance is disingenuous at best.

Reducing ‘adult social care’ to ‘residential care’ is also enormously deceptive. There’s a lot happening to and with people who don’t own properties.

Carers

There is expected to be a broadening and firming up of rights of carers and duties of local authorities to provide support. I will be very glad to see this. There are enormous complexities in the systems that we are often not very good at explaining to people who are unfamiliar with the jargon. While ‘powers’ to provide support are all well and good, ‘duties’ are better and can be challenged.

Personalisation

We’ve heard Burstow make noises about increasing choice and moving away from minute by minute commissioning. I am really excited to see what will be proposed to avoid this and particularly seeing the focus more heavily fall on the commissioning by local authorities which favours block contracts with large companies. In fact, oddly for me, this is the area which I hold out the most hope for in terms of the content of the White Paper – with a look at the way the processes of commissioning can bring in more local organisations to provide more interesting/creative and most importantly – individually tailored support.  I expect a lot in this and I hope for a lot too.

Safeguarding

This is another area I think will be shored up. The current processes of adult safeguarding can be frustratingly flimsy at times and it is very hard to bring some prosecutions or to take speedy action as would be the case if the age of those who are being abused were under 18. I think we need to look at streamline the procedures and pathways in terms of safeguarding so it doesn’t become meaningless in terms of a process – and we need teeth that can bite in terms of protection of adults who may potentially be abused.

It’s can be a difficult balance often but it’s really important to be able to get this right and can be improved considerably.

Access to Support

I don’t expect many significant changes to the eligibility frameworks although I can’t help hoping for it. I do expect to see more entitlements to support/information/advice to those who fund their own care and are not reliant on local authority to pay some or all of the costs. I will be very glad to see this. It is an enormously complex system to navigate and everyone is entitled to help to access and understand it, regardless of income/assets.

Legislative Frameworks

We know the legislative framework is going to be ‘tidied up’ so we aren’t needing to hark back to legislation from the 40s (National Assistance Act (1948) I’m looking at YOU). I expect the new composite Adult Social Care Bill will encompass previous legislation. It will be interesting to see the specified roles around assessment/entitlements to services and how they are updated in the context of ‘self-assessments’ and ‘call centre assessments’. I hope they are.

Final Thoughts

While reading and thinking about the White Paper,. I’m going to conclude with five key points to remember.

Adult Social Care is not just about older people.

Adult Social Care is not just for ‘other people’

Adult Social Care is not just about funding possible residential care.

Anywhere ‘choice’ is mentioned I want to see how it will be extended to all, even those who may not be able to engage with decision-making processes individually.

Adult Social Care isn’t free. You don’t get it paid for if you ‘pay into the system all your life’. The funding stream doesn’t work like that. The funding stream needs to change and the governments and parties (all of them) need to bang their heads together in order to improve the quality of life for some of the citizens who rely most on the state to provide support/guidance/assistance and quality of care.

I’ve said it before but I want to work in a system which offers quality and excellence in terms of support – not the minimum amount at the minimum cost.

I’ll read the White Paper with interest and am sure I’ll be back tomorrow to comment on it.

picture by Bashed at Flickr

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

Shifts in Support Planning

Pen and Paper (1024)
Community Care alerted me to a new report developed about a great model of support planning  called ‘Empower and Enable’  that is being proposed as a way to invigorate the ‘personalisation’ agenda and move it back to the roots of putting the user at the heart of support planning and removing this from the scope of professionals.

In the process of developing and implementing care currently, after the assessment has been fed through the ‘resource allocation system’ and an indicative budget has been established – the ‘support planning’ comes in to build, yes, you guessed it, a ‘support plan’ which would be what might have been called a ‘care plan’ in the past and details how that support will be delivered for the individual to whom it relates.

Groundswell  Partnership , the ‘personalisation consultancy’  who wrote it, explain that councils should change their models of support planning and move the focus back towards the users of the services provided.

I couldn’t possibly agree more. This is what we were told when the whole personalisation agenda was moved out and I can’t honestly see what’s different apart from the lack of roll out to wider groups than those that  benefited from direct payments. This was the ethos behind rolling  ‘personalisation’ out beyond those who were receiving direct payments previously to everyone in general.

The model presented is one of ensuring that information is more freely available and that ‘professionals’ don’t need to take hold of support planning. It  talks about shedding the ‘belief’ that professional support is necessary to enable support planning. Absolutely right.   I would counter that councils have been trying to move away from professional support for support planning as it is more expensive but are too slow to change and stuck in systems of commissioning and getting services ‘approved’ to have moved quickly enough on this.

Currently, I am deeply concerned that the level of access to support and different kinds of support can be based on the particular social worker or care coordinator allocated in terms of our own knowledge of available services – particularly as regards managed personal budgets. I agree that the way around this is to make as  much information about resources and services open access – including costs and deductions and details of block contracts and how they are delivered,  so that anyone and everyone can have equal knowledge.

I love the idea that support planning should take time but there needs to be some thought to the more immediate support planning that might take place in a crisis situation and looking at how that can feed into these models and look at ways that people can – as far as possible – build in contingencies and forward planning into the current support plans.

The report also talks about building on community capacity to provide support and support planning. Wonderful. Truly wonderful but it fails to tackle those who are excluded by the communities in which they live. Working with a number of people who may lack capacity to manage their own support planning, lack informal support and are isolated or excluded by their community, I often wonder when a realistic report is going to tackle this issue properly – rather than a sentence saying ‘some people may need professional support’.  Maybe it needs it’s own report. I’d love to see that. Honestly. I want to cheer these reports as they flow out of the ‘personalisation consultancies’ and I often do but I need to see some innovative thinking that looks at the realities I face daily.

I would counter that ‘these people’ who lack capacity require independent advocacy on top of professional support. Relying on a social worker for support planning, particularly in work with older adults where the case loads and expectations regarding quantity of work undertaken is particularly high, is absolutely going to  produce a poorer quality support plan. I don’t think anyone is denying that – including the local authority employers – I suspect they would love to tender out this role however the clunky nature of contracting and commissioning makes this slow moving.

I know I put together some poor support plans myself. It doesn’t make me proud. I don’t go to work thinking to myself ‘today I’m doing to produce a poor support plan and I’m not going to ask Mrs Brown or her family about what she actually wants’. I try to consult but the time needed is squeezed. I try to engage family and friends, but you know, believe it or not, some families or friends actually don’t want to be actively involved and some people don’t have family and friends.

These reports are fantastic. We need more. We need more reports to explain why we are doing a poor job about providing support planning.

But what we also need are properly assessed and arranged targets set to local authorities that demand involvement by users in more than a peripheral box ticking way.

We need resources to provide effective and independent advocacy which will allow for equality of access to innovative support planning tools for those who are not able to independently access them for themselves.

My own dream was to break free from the LA yoke and establish some kind of local social enterprise type organisation that would be able to offer dual support planning and non-directed advocacy for those who lack capacity to produce really good support plans and support networks to fill in the gaps for those who don’t have the informal networks or whose family want to support and help but might not be able to to the extent expected sometimes.

If anyone wants to fund me or pay my salary while I do that, please do let me know.

There are better ways. I’m sure of it. While I enjoyed reading the report as it is,  my brain was buzzing about how this model could work with the people I see every day – I’m still waiting for a report to deal with that. And if noone will fund my little social enterprise project, perhaps they could commission me to write report – for myself – about ways it could work better.

But I don’t think I can promise what these reports promise – which is zero cost.

And possibly that’s the key.