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.

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Sickness benefits, suspicion, and anxiety

Inequalities

In a guest post, Kayleigh Garthwaite talks about her recent research with sickness benefit claimants.  Prompted by a hostile email from a GP after speaking about her research recently on national radio, Kayleigh reflects on the real barriers that sickness benefit claimants face, and the challenges of living in a climate of institutionalised suspicion.

What does it mean for sickness benefit claimants to live in a climate of suspicion?

For the past three years, I have been studying the lives of long-term sickness benefits recipients in North East England as part of my PhD research. Recently, I was asked to appear on BBC Radio 4’s ‘Thinking Allowed’ to discuss welfare reform, following a symposium organised by Ben Baumberg and Ruth Patrick in Leeds.

On the programme, I spoke about how a deep-seated fear of welfare reform pervaded the daily lives of people in the study. Some people were afraid of…

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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.

Why I’ve joined the National Health Action Party

Several years ago I quit party politics, quietly resigning from the Labour Party in a fit of disillusionment that I’ve documented here. The superficiality, the blatant careerism and the detachment from the real concerns of real communities had just become too much. Today I did something I thought I’d never do again, and joined a political party.

Since I heard about the National Health Action Party I reflected for some time about whether to support it. I’ve never been particularly one for single-issue politics. My interests are broad and eclectic. I have political views not just on the NHS but also on social inequality, the environment and foreign policy. Then again, parties that started out as single-issue have evolved into broader-based platforms. The Greens are a good example of this.

What is unarguable is that people in the NHS (and people who work elsewhere in health and social care) need to stand up and shout. I’m on the Celtic fringes, so I’m not affected by the wranglings over Clinical Commissioning Groups. Even so, I’ve seen services shrinking: not just in my CAMHS team, but in the social services departments and the schools with which we liaise regularly.

During the recent party conferences, it was depressed how little rhetoric there was about the most vulnerable in society – people with low incomes, or with disabilities and illnesses, the unemployed. If they were spoken about at all, it was to castigate them as scroungers, feeding off the “strivers”. The Tories were the worst for this, unsurprisingly, but Labour were notable for their deafening silence.

There’s a simple reason for this: the poorer and more vulnerable you are, the less likely you are to vote, effectively making you an unperson in political terms, to be ignored while the “squeezed middle” are assiduously courted. Theirs is a silent voice that needs to be heard.

Perhaps a party formed by healthcare professionals can go some way towards raising the unasked questions in politics. Lord knows we could do with a party that doesn’t contain the career politicians who have blighted the Tories and Labour. The recent documentary Young, Bright and On the Right showed just how divorced some of these strutting self-promoters are from the real world, and illustrate the ghastly process that spawned the likes of George Osborne and Jeremy Hunt.

Even if they don’t break out into the mainstream, single-issue parties can sometimes have an impact in terms of pushing the existing parties to deal with issues they’d previously ignored. Again, the Greens are a good example, forcing the Thatcher government to embrace environmental policies after being hurt at the ballot box.

From today, the NHA Party are getting my cautious support. It’s clearly a fledgling party, but it’s one that deserves to be given the opportunity to see what it can do. I’m in.

World Mental Health Day 2012

10 October marks World Mental Health Day. This year’s theme focuses particularly on depression.

Having worked with and known people who have suffered with depression, I think awareness raising in this context is crucial. The word ‘depression’ has moved into common parlance. I might talk about feeling depressed on a daily basis when something comes up that affects my mood negatively.

Actually suffering from the symptoms of depression is vastly different and in some ways, language isn’t a friend to those who do suffer from depression.

As we allow ‘depression’ to become almost synonymous with ‘sadness’ we misjudge a swathe of people for whom the illness is an immense source of difficulty. pain and distress. Depression isn’t sadness. Depression isn’t about the ebb and flow of mood. Depression can be debilitating and hopeless. Depression needs to be far better understood in that context and in the context that it can affect anyone and everyone – regardless of background, class or social status.

We can’t make judgements externally by looking at someone else’s life and decide if they ‘should be happy or not’ because depression doesn’t work like that. Life doesn’t work like that.

What we can do is look and see if someone is suffering and if they are, why should we do anything other than empathise with that experience of suffering and try to alleviate that in any way possible.

Having walked alongside, as far as possible, those who have and do experience depression, I have an admiration for the immense struggle that comes with each day and I learn from it.

My hope for this World Mental Health Day which seeks to increase understanding and reduce stigma is that depression isn’t seen as something is a decision people make about their lives. It can’t be ‘shaken off’ at will.

That needs understanding and that needs focus.

Strivers and Strugglers

As the Conservative Party Conference begins in Birmingham, Cameron has set out his agenda of further benefit cuts and a focus on the ‘strivers’ in society.

Who are these ‘strivers’? They are people who ‘work hard and want to get on in life’.

The issue is that I believe Cameron’s definition both of ‘working hard’ and ‘getting on in life’ is probably vastly different to my reality and the realities I’ve seen at work.

The ‘benefit claimants’ v ‘hard worker’ dynamic is a very toxic one. The government has become very used to divide and rule and this is a further demonstration – and is particularly nefarious in a time of high unemployment and particularly high youth unemployment.

Cameron seems to work on the assumption that all people who have jobs ‘worked hard’ to get them and ‘work hard’ at them. I would challenge that. I wonder  how ‘hard’ the Duchess of Cambridge works at her job.

And looking for work can be an exhausting, demoralising and exceptionally difficult piece of ‘work’. As can caring full time for a family member (with a paltry ‘carers allowance’). Are these people counted as ‘strivers’ in Cameron’s books? What about people who contribute to a community? What about people who overcome challenges and difficulties, including health-related ones for whom actually just getting through the day is an enormous challenge – are they ‘strivers’?  Do they really not work as hard as some people who drive buses, work in social services offices, work in banks etc?  There are hard jobs, of course, but there are also hard lives that exist outside jobs.

The best thing we can do is bat back this ‘striver’ agenda. I don’t want to live in a society that grinds down on those at the bottom without making further expectations of those who have been able to make a success of their lives – and I include myself in that.

Punishing people who don’t, can’t or aren’t able to work seems to be a populist agenda but one of the key things as a social worker I feel a need to challenge are the assumptions made from the safety of the Westminster village about the day to day effects that their policies and their discriminatory rhetoric has on the lives of those who DO strive. Strive desperately – but strive without economic recompense and strive for different goals.

Compassionate Conservatism? It was never anything but empty words.