Home really is where the heart is

Home really is where the heart is.

My other  (less political) blog on health and social care. The above  post summarises a recent report  published on home care in England.

What I would say to Norman Lamb

Norman Lamb MP

Working in dementia services at the ‘frontline’ I often consider what messages I’d feed back to the local and national policy makers if I ever had the opportunity. Of course, I don’t have these opportunities as I’m not a manager so I thought I’d imagine I were at an important meeting with Norman Lamb, the minister for Care Services.

This is what I’d say.

Make policy practical. Making the right noises about setting up a wonderful plan to ‘challenge’ dementia is all well and good but I see nothing of that at the ‘frontline’.

What I see are cuts. I see respite narrowing in terms of ability to access. I see provisions which had been helpful, closing. I see a lack of beds in the local hospitals when they are needed and I see people who need support being denied it because there are no provisions left.

So take your pleasantries and policy ideas and come and spend a day with me in the community and you’ll see why I am impatient and unbelieving about the platitudes that emerge from those who don’t seem to understand what is happening ‘out there’.

I’m tired. I’m tired of saying ‘no’ to people whom I see need services because the provisions are so tight. I’m tired of saying ‘no’ to people at the early stages of need when I know it will prevent higher costs in terms of pain and suffering but also in terms of money in the longer run. I’m tired of logging targets that have no meaning in the lives of those whom I work with. I’m tired of jumping through artificial targets so I can ‘prove’ I’m doing my job when neglecting visits to actually talk to people because I have to catch up on the paperwork.

I have waited for years for a fair system of implementing personalised responses to care which include people with dementia but am still waiting because the entire focus on the programmes developed through personalisation have been on those who are more able to be involved in the processes or those who have involved family members to help them. I’m tired of wading through appallingly designed forms, self assessments and RAS (resource allocation systems) that focus entirely on physical health needs and marginalise mental health needs thereby ignoring equality legislation.

I want action and yes, sometimes, action includes money. I know what the people I work with ask for and I know I can’t deliver it – not through a lack of will – I want to be able to go home thinking I’m doing a good job and doing my best – and for the most part, I think I do – but the best I can offer is very sparse. The best i can do isn’t good enough.

We have few residential homes locally and are placing people further from their families. We have nothing ‘creative’ left to offer as those agencies which are helping with ‘support planning’ aren’t trained to offer support in non-directed advocacy and therefore if someone doesn’t ask, they don’t get.

So what would I do? I don’t have a budget and it’s probably for the best as I’d steam through it in five minutes – one of the many reasons I’m not and will never be a manager – but I would focus on trying to create a system of social care which offers equality of access to good and creative support planning.

I’d commission more non-directed advocacy into support planning. I’d roll out Individual Service Funds for people with dementia and I’d allow more time for carers – and for social workers to work with people who have dementia because honestly, that’s what’s needed.

However all we get is platitudes about how wonderful services will be without extra money being provided. Yes, I’m sure early diagnosis is important. It is. But please, please can the Department of Health and local government concentrate their minds on what is happening now and the poor services we are providing now and do something, anything to make them better.

I want to do my job well and I want to support people but all the tools I had available for doing so are being ripped away from me. It’s sometimes hard to keep the motivation up when you don’t believe you are helping anymore.

I’m the person saying ‘no’. Me, not the Head of Adult Services, not the Ministers responsible, not the councillors responsible. I sit in people’s homes and tell them what they are not entitled to anymore. I want those who make these decisions to take responsibility for that and to listen to us who go out there and who see.

That’s what I’d like.

picture by Liberal Democrats at Flickr

‘Reclaiming’ Care Home Fees

A deathly silence has descended upon us!  Call me sceptical but I couldn’t help noticing that it started around the 30th September 2012.  Claims companies that were once assisting the good people of this fair land to ‘claim back’ (almost as if they were referring to a benefit that had not been claimed by the masses) care home fees that they had incurred for themselves or a family member fell silent.

So why has it all gone quiet?

Until recently, individuals and family members have been able to make retrospective claims (backdate their claim) if it was identified that they or a family member were paying for all or some of their care when in fact they should have been receiving full funding to pay for it.   There then was a decision to place a deadline on retrospective claims which is why there has recently been an influx of ‘helpful’ organisations desperate to assist you.  In return for their kind assistance they would take a percentage of your successful claim.  However, one of the deadlines for making retrospective claims that could date back several years has now passed and there remains a less modest time-frame within which claims can be back-dated.

For cases during the period 1st April 2011 – 31st March 2012 the deadline for individuals or their families and representatives to notify the relevant Primary Care Trust will be 31st March 2013.

The truth of the matter is, not everyone who has paid care home fees is entitled to claim a refund.  They were of course referring to Continuing Healthcare funding which is the NHS funding stream that enables some people to have their care home fees refunded or not pay them in the first place if that person meets the eligibility criteria for Continuing Healthcare funding.  Throughout this article I am using the example of a care home but the same information applies to all care such as nursing homes, live-in carers and care agencies visiting someone in their own home.

Why do some have to pay for care home fees and others not?

Care homes charge a weekly fee to cover the cost of such expenses as accommodation and care.  This can range from a few hundred pounds to several thousands of pounds depending upon the care provider and the necessary skills required by the home and carers.  Anyone who is in need of such care is entitled to a community care assessment from the local adult social service department.  If, following this assessment the individual is eligible for help from social services they will then receive a financial assessment.  This has been common practice for a number of years and beyond the scope of this article to discuss in any depth. If an individual has assets (such as savings or a property not being lived in) just over £23000 then they will be required to pay 100% of their care (in this case the care home fees).  If they have less than this amount, they pay variable contributions towards the care home fees and the local authority pay the remainder.  Local authorities usually have funding thresholds which are a maximum they will pay for a care home so won’t automatically pay thousands of pounds each week if the same care is available within their funding limits.

Can I avoid paying care home fees?

This is where Continuing Healthcare funding comes into the equation: Continuing Healthcare or CHC as it is usually referred to is the NHS funding stream used to pay for care fees is someone’s needs are predominantly health related.  Because it is the NHS, unlike social service funding (see section above) CHC funding isn’t means tested and you don’t pay a contribution towards your care home fees.  In practical terms, receiving CHC funding rather than social services funding could be the difference between having to sell your home to pay for care home fees and keeping it!  It is worth reiterating though that not everyone in a care home is entitled for CHC funding.

How do I see if I’m eligible for CHC funding?

The CHC assessment process is detailed within 2 documents; they are national documents so it shouldn’t matter where in the country you live.  I say that with slight apprehension because in reality any assessment that involves human intervention is not always 100% objective all of the time.  If you would like more information, the documents are:

Eligibility for CHC funding starts with the completion of a checklist.  This will be considered when an individual is discharged from hospital for instance or can be requested at any time.  Professional including G.P.’s, social workers, district nurses & occupational therapists might also complete a checklist.  Individuals or family members can also ask for a checklist to be completed.  The threshold for the checklist is set lower than the eligibility threshold to ensure that everyone who may be eligible for CHC funding is considered.

If the checklist has a positive outcome (high enough scores) the full consideration for CHC funding is undertaken in the form of a decision support tool (DST).  A DST isn’t an assessment itself but a tool to help professionals collect all the relevant information such as assessments in order to reach a conclusion as to whether someone is eligible for CHC funding.

How is a decision about CHC funding made?

If someone has a rapidly deteriorating health condition, a G.P. or health professional can ‘fast-track’ a CHC application and avoid an unnecessary assessment; the funding should be agreed by the local Primary Care Trust without question and immediately. Your local Primary Care Trust or PCT is the agency responsible for administering NHS services such as CHC funding at a local level.

If a DST has been completed, the professionals involved will look at the tool and make a decision based on the following characteristics:

Nature –   This describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the type of those needs. It also describes the quality of care required to meet those needs.

Intensity – This relates both to the quality and severity of the need and the support required to meet them, including the need for ongoing care.

Complexity – This is concerned with how the needs present and interact to increase the skills required of the carers.

Unpredictability – This describes the degree to which needs fluctuate and thereby create challenges in managing them.

As you can see, the process isn’t an exact science and can’t be determined by a series of tick boxes.  The determining factor is whether the care required is predominantly health related than social care.  A local authority is not permitted to provide or pay for health care which is why health funding such as CHC exists.

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.