Death Pathway 2: Return of the Controversy

I originally published a post on the LCP in November 2012 before the independant review was announced

That Old Chestnut

[Guest post by Sharon Levisohn]

Mother came home from hospital on Friday, having been in over Christmas and New Year. She has advanced COPD (emphysema) and had a respiratory virus that resulted in pneumonia.

However, her lengthy stay was not due to her illness – a week of steroids and antibiotics settled that insofar as it could be – but the inability to plan a discharge to meet her ongoing needs. The hospital wanted to send her home with three (local authority funded) home care visits plus daily district nurse calls. The social worker could not authorise the home care package without it “going to panel” and of course there would be no more panel meetings until January 7th. Then the hospital suggested a nursing home placement but, despite full-time oxygen dependency and limited mobility, my mother did not meet the criteria for a funded admission. Next they suggested a short admission to a cottage hospital. That was rejected as they thought, frankly, that the journey would kill her. Plan D was to be discharged home with the support of the (health-funded) Re-enablement Team; however, she was not open to this as her condition was too far progressed for rehabilitation. All this time, Mother was in an acute bed – one of those infamous bed-blockers – on a ward with confirmed Norovirus, while the family and I rode the Waltzer of uncertainty and conflicting updates, always aware that she might just give up the long battle with COPD.

What is the point of this personal anecdote of woe over the festive period? I suppose it is not a unique case; even on the ward there were several other patients unwillingly playing the Cherchez La Femme game of discharge co-ordination. How many patients and families in how many hospitals were going through similar experiences? What vexed me – and as a former nurse I am not criticising the frontline ward staff – was that the hospital did not seem to know what qualifying factors were applied to the various options – one might have assumed that they had confirmed Mother’s eligibility before informing her and the family only to dash their hopes. The other bugbear is the responsibility for funding. Surely, if a risk assessment has shown that a frail elderly terminally ill patient has been assessed as needing input from various agencies in order to be at home with the people and dogs and personal touches she loves, which give her a little quality of life, and if we believe that it is better for the elderly to live at home so far as is possible, surely then the funding needs to be provided? Or shall we simply abandon that principle as practically unviable?

Exporting Care

Location, Location, Location

Yesterday I read this article in the Guardian. It reports that in Germany there is an increase in Germans being placed in residential, retirement and rehabilitation units in eastern Europe where the costs are lower.

As the article says

Germany’s chronic care crisis – the care industry suffers from lack of workers and soaring costs – has for years been mitigated by eastern Europeans migrating to Germany in growing numbers to care for the country’s elderly.

But the transfer of old people to eastern Europe is being seen as a new and desperate departure, indicating that even with imported, cheaper workers, the system is unworkable.

But before we are too quick to castigate Germany, I think it’s important that we look at what happens in this country.

Until one month ago, I was a local authority employed social worker, seconded into an NHS Trust (as I was a mental health social worker) working predominantly with older people. I made a lot of residential and nursing placements. I worked in an inner London borough.

The amount of local placements we had came nowhere near meeting the needs of the local community. Yes, there has been a push towards caring for people longer at home – perhaps it was a feature of central London, perhaps not,  but many of the people I worked with did not have family around them. The cost of housing had pretty much seen to that in terms of ripping communities apart.

Still, there are pockets of close communities even amid the high towers of the financial centres of London. Among the office blocks and fancy shopping streets, there are communities that have evolved over the decades, centuries even and those tourist spots visitors see, they are ‘home’ to many people who might not wear the smartest suits or have the fanciest accessories.

We ‘converted’ some of the residential provision locally into ‘extra care sheltered’ provision – see, that would be good, that would ‘keep people at home’ for longer.

So where are we now?

The chances of getting a placement in the local area are very slim to zero. We had waiting lists months long for some of the residential provisions in the area. The wonderful ‘extra care sheltered’ housing provision realised soon that they could not manage the needs of those who needed 24 hour residential support or maybe the criteria for residential care moved higher but they have not truly become an alternative for someone who needs a residential placement. They have become a safer environment with a constant ‘warden’ for those who may otherwise have had sheltered accommodation.

So there are fewer residential and nursing placements for people who are local to the area. If a family shouts and hollers enough they may get someone on the ‘waiting list’ for a place. Who knows when that place will come up. We don’t like saying it explicitly  but places in residential and nursing homes usually come up for one reason and that’s a death or a deterioration in physical health and noone wants to think about that.

What does a local authority do then?

It moves people out. It is more likely to move out people who have no family support and no ‘links’ to the area. You see, living somewhere for 70+ years isn’t seen as ‘link’ enough if your family and friends aren’t there. Anyway, even if they don’t want to move you out, if there are no beds, there are no beds.

So while we aren’t moving people to other countries, that’s only really by virtue of us being an island. We aren’t that much better than Germany in this respect. We are moving people to unfamiliar settings and localities on the basis of cost alone.

Commissioning Quality

How are these decisions made? Well, to absolve myself from responsibility, I’ll say it wasn’t my decision. I did and do rage against it. I raised it internally as the ways these decisions are made are purely on the basis of finances of local authorities to make placements.

Currently, in inner London we are placing frequently in outer London but soon it will be the Home Counties and further and further away from familiarity. I wonder how consistent this is with the Mental Capacity Act which demands previous preferences are taken into account. This can be ridden over roughshod if there aren’t any local placements at the right cost.

So we move to commissioning. There has been a race to the bottom in terms of providing services and placements at the lowest cost. Property is a massive cost in central London so cheaper land can push down general cost but at what price to autonomy and preference?

There has to be a way for commissioners to be accountable for the decisions they make. Families can push and make complaints on behalf of those who are not able to make decisions for themselves but there really needs to be, in my opinion, some external scrutiny of commissioning decisions made by people who really understand the social care sector. Yes, councillors can scrutinise but how many understand the needs of those who are not pounding on their doors making complaints about council services? Who understands that those who have the quietest voices or who have noone to advocate for them may be having their rights ripped away from them?

I’m not sure of the answers. All I know is that I wish the commissioners would have listened to their social workers. I wish there were a stronger, formal system of advocacy which would raise these issues with people who commission services and I wish there were an understanding in central government of the impact that geography makes on the cost of social care.

There may be cheaper and more available placements in South Yorkshire but that doesn’t mean the answer is placing Londoners there. I fear it may well be in the future.

We can’t become too complacent. Germany today may well be Britain tomorrow.

Beyond Winterbourne

Yesterday, the Department of Health published ‘Transforming Care : A national response to Winterbourne View Hospital’ (PDF)  the ‘final report’ about learning and developments following the case which highlighted, via a BBC Panorama documentary, the systematic abuse which was embedded in the running of a private hospital for people with learning disabilities ‘with a stated purpose of providing assessment, treatment and rehabilitation’.

The failings were found not only in operation of the hospital  but in a complicated and confused health and social care system which on the one hand seems to have been moving away from ‘institutionalisation’ over the past few decades while on the other hand commissioning services which embed institutionalisation and powerlessness into failing and very expensive systems’. The case of Winterbourne View also highlighted the failure of the regulator, the CQC, to respond to information provided by a whistle-blower and of local authorities and commissioning NHS Trusts to actually quality assure the services which are being provided.

Another related report which was also published yesterday (PDF)  came from Family Mosaic – a housing association which provides supported living services which highlights its own failings in terms of poor care and proactively looks at new policies and ways to turn this around. In a way, the Family Mosaic document – is a testament to an organisation which wants to learn pre-emptively and the organisation should be applauded for producing it.

I want to look at some of the issues in both these reports as I think they are  linked,.

Lessons from Winterbourne View

The introduction to the report sets the context of Winterbourne View Hospital – a placement for 24 adults with learning disabilities. The report explains that 48 patients had been referred there since its opening in 2006. The average cost of a placement was £3500 per week and

‘13 were referred by commissioners within 20 miles

12 were referred by commissioners within 20-40miles

14 were referred by commissioners between 40-120 miles

9 were referred by commissioners over 120 miles’

14 separate English NHS commissioning bodies had acquired places there plus some unspecified (presumably a problem with exact data) from Wales..

You’d think that maybe there’d be quite a lot of quality assurance going on with all that money streaming in.

Both the Serious Case Review and this report pick up on the amount of lost opportunities in terms of communication between agencies – between commissioners and between primary and secondary health care services. There has been a lot of confusion – not least from the Secretary of State about the position of Winterbourne View but that fact that it was a hospital and received detained patients (rather than a care home which it has been incorrectly yet frequently referred to) means some of the responsibilities and monitoring processes would be different.

The police, hospitals, commissioning bodies, local authority (who was responsible for safeguarding alerts), CQC Inspectors and Mental Health Act Commissioners seemed to have failed to ‘join the dots’.

While the Serious Case Review goes into detail about what went wrong, this report is more interesting in terms of what is going to happen next.

What is happening as a result

Immediately the CQC changed some of the systems for pulling in whistleblowing information and started an inspection programme for learning disabilities settings.

There was to be (and is to be) a focus on more local settings where possible as distance from family and familiar settings is crucial. Where it is not possible the placing authority should remain in close contact and plan moves back to local areas as soon as possible. A long term distant placement is not an option.

Hospital the report states, which should be obvious I guess, is not a long term placement and should only be used for the minimum time necessary.

If it is necessary at all.

The report talks about the need to listen to people with learning disabilities and their advocates as ‘not listening’ was a big failure. It’s important that listening is beyond hearing what someone might say as well – particularly if there are communication difficulties. It’s important that those who don’t have families to advocate for them are heard as well. Fortunately the report touches on the need for strong advocacy services to be developed.

What will happen

The Department of Health has set a timetable for June 2014 for a ‘rapid reduction in the number of people with challenging behaviour in hospitals or large scale residential care’.  These numbers will be monitored by the DoH.

I am interested when the report talks about ‘people with challenging behaviour’ if they are just referring to people with learning disabilities. My hope is that they aren’t and this will apply equality to those people who have more advanced dementias and may display behaviours which could be interpreted as challenging due to communication difficulties

There is an emphasis on ‘personal care plans’ being developed which partly shows the failing of the personalisation agenda to date as it has completely passed by swathes of people with the highest needs. Maybe there’ll be some attempt to ‘catch up’ now. Let’s hope.

Interesting to that the report nudges the CQC to consider the ‘model of care’ delivered in terms of regulation and compliance. .Personally I’d see that meaning that these larger institutions inherently carry a ‘higher risk’ but it will be interesting to see how that develops.

Interesting that the report focuses (rightly) on the involvement of ‘families and self advocates’ in driving quality and change. My only comment would be a plea for the Department of Health not to forget those people who have very high support needs and who are, due to their cognitive impairments, not able to ‘self-advocate’ and who do not have family advocates. There is a gap here and often these people are at high risk of abuse due to the lack of ‘supporting voices’. There must be a way for formal advocacy to speak on their behalf.

Strengthening Corporate Responsibility

The report also looks at the organisational failings of Castlebeck and the lack of responsibility taken by the organisation itself.  The report urges the CQC to take more enforcement action organisationally if necessary and there has been a move to appoint ‘Corporate Compliance Managers’ – presumably to hold large organisations to account.  The Department of Health will also be looking at the way the CQC are able to ensure the ‘fit and proper person; test which is applied to registration can apply to organisations – whether a board member is nominated to be responsible. However the powers do not exist in legislation for the CQC to check more than one appointed person. This is something that strays into the ‘to be decided’ part of the action plan but no doubt will be an interesting space to watch.

Improving Practice

The report highlights good practice in the hope it will be modelled  more broadly. A voluntary register for people working in adult social care is being mooted. Personally I favoured full regulation of the social care workforce but that’s likely to be too costly to organisations who are working on minimum wage payments to many staff whom they don’t necessarily want to professionalise even though the work is crucial. The low status of social care work is inherent in the attitudes of employing organisations. Training is important though and so is modelling of good care. While compassion doesn’t cost, environments in which it can flourish are better sustained when staff aren’t under constant pressure and are treated, themselves, with respect.

Whistleblowing mechanisms are mentioned and tightened where they haven’t been already.

Particularly interesting to me as a (now) ex-AMHP and BIA was mention of the Mental Health Act and Mental Capacity Act. The report confirms that 73% of the people are Winterbourne View were detained under the Mental Health Act. They should have had statutory protections of appeals and access to IMHAs. It also makes one wonder under what grounds the other 27% were being detained. Was it –really- ‘informal’? Were DoLs ever used? If not, were there any questions asked by those visiting about why or why not?

One of the most interesting ‘key actions’ to me is that

‘The Department of Health will work with CQC to agree how best to raise awareness of and ensure compliance with Deprivation of Liberty Safeguards (DoLs) provisions to protect individuals and their human rights and to report by Spring 2014.

I have a particular interest in DoLs – their use and their lack of use so will certainly be keeping a VERY close eye on this. I’ll try not to be cynical. I’ll really try.

Family Mosaic’s proactive report

Family Mosaic’s ‘No Going Back’ report (PDF) unfortunately has faded into second place in this post but it almost deserves more than one post to itself however the themes link in so tightly with the Winterbourne View Review.

I’d recommend that both reports are read together and it is commendable that Family Mosaic as a provider organisation have looked proactively at how they can do better in terms of challenging institutionalisation and poor practice among their own staff.

The report looks at the history of ‘deinstitutionalisation’ and the move to Community Care principles but also where the failings have crept back and cultures where care may be delivered in different settings but where the quality has been in question and abuse has resulted.

The organisation provides examples of poor and indeed, abusive care in its own settings to look at how to improve and what to offer in terms of building a better culture of delivery of care.

One of the interesting aspects they consider is the lack of ‘whistleblowing’ so that staff who might witness poor care and who have been on the requisite training may not feel they are in a position to report it or may not recognise it when they are involved in the delivery.

The report focuses on aims and action points for the organisation as a whole including a more open policy towards whistleblowers and those who raise concerns internally.

It explains clearly basic expectations for delivery of services to service users by staff and all in all, it is a fantastic piece of work by Family Mosaic who should be commended.

Conclusion

These two documents offer a way forward for delivery of care and attitudes towards those who need care. I wish we had a Winterbourne View type document and review of care for older people, particularly older people with dementia and hopefully when the document refers to ‘people with challenging behaviour (a term I don’t really like to be honest’ it isn’t only referring to those in learning disabilities settings – however I fear it is.  We need to have a wholesale reappraisal of large institutional settings for care delivery – be they hospitals for people with learning disabilities or 90 bedded nursing homes for people with dementia. Age/cognitive ability/family involvement/means to self-advocacy cannot determine ones right to dignified and high quality care.

Family Mosaic have presented a good model that moves beyond care for those with learning disabilities – I hope more providers take notice and take a proactive response.

However, there will be costs and if the government is truly intent on building better services across the board and for all sectors, there has to be an understanding that the money will have to come from somewhere.

I hope it will happen. The right noises are being made. I just hope the results are equally satisfying.

Patient Stories – Will we learn?

Today the Patients Association published a report ‘Patient Stories’ (PDF). It focuses on thirteen different stories. These are stories directly about the experiences of patients through hospital systems and discharges. Some are told by family members when the person involved and some are told directly.  Some are anonymised and one is from a doctor who received treatment herself.

The format of ‘telling stories’ is a good one because it makes for interesting reporting. It personalises tales that we know about poorly managed hospital discharges which take place before they should because we hear the voices of those directly affected and it is easy to see the lack of humanity in some of the systems that exist in acute health care.

Sometimes what is remembered is a single comment which may have been made by a busy member of staff in an offhand manner, for example, in relation to Margaret Allen, her sister writes

‘my (other) sister called the hospital to enquire after Margaret’s health before her death. The answering nurse replied that Margaret was ‘screaming away nicely’ and held the phone out for my sister to hear her cries’.

There are some shocking details in some of the stories of miscommunication, arrogance and rudeness of staff, basic care not being given but sometimes it is these snippets of language which are telling in terms of respect and attitudes of professionals towards staff.

While it may be possible to write these off as ‘individual stories’, I think that would be an massive error because there is an enormous amount of learning and themes which can be traced – not just through these stories but through the similar ones that have emerged over many years.

There is a consistent lack of flexibility and a lack of listening in these processes.

An example would be in the story of George Robertshaw who was admitted to hospital and was discharged in a way that his GP felt was ‘unsafe’ due to it being so rapid and was discharged in thin pyjamas in the winter – so that when carers did arrive to him he was cold, hungry, very thirsty and still not well.

His daughter writes

‘Following my father’s death, I again spoke to someone to inform them of my father’s demise and that I would be making a formal complaint re procedures. She told me directly that she would ask a nursing director to phone me back in a day or two, This never happened. No call, no communication, no nothing. I again rang and I was told that they had informed whoever it would be and that they would remind them. I got the impression that the relevant person was present but did not wish to speak to me and was telling the person on the phone what to say

Again, this could be claimed to be an isolated incident but as a rule of thumb and as someone who takes quite a lot of verbal complaints about the services that I provide, I tend to assume for everyone one person who complains or whose family complains, there are far more who will not have the confidence, strength or understanding to do so. It is important that systematic errors are challenged and improved but it is also important that clarity of information and respect are given to those who use services.

I wonder if that same Nursing Director would have been so slow to respond to her own manager? No? Then treat the people who use the services, particularly if they have a complaint with at least enough respect to contact them in the same time frames – even if it’s a matter of updating them with no additional information.

An organisation which is not willing to take or deal with complaints, cannot be a ‘learning organisation’ which is willing to improve.

I don’t have time to identify the issues in all the stories but it is worth reading as a snapshot of some of the care which is being given in hospitals in this country.

Of course there are good stories, and there are fantastic staff. The very first section of the report is based on positive feedback but we cannot ever become defensive about the systems as they exist and must treat each of these experiences as areas of learning. Sometimes it isn’t always about resources, it’s about respect and it’s about listening and responding.

Yes the NHS is wonderful and many of us have personal stories of gratitude, I have many myself, but if there is anything that can be done by any one of us to make things better, we absolutely must.

The main lesson I will take from these stories is to make sure that every interaction is bounded in dignity and respect. Mistakes happen but they can be resolved by listening and learning from those who experience them.

Defensive organisations that won’t encourage criticism are dangerous organisations. These lessons are just as important in all social care organisations as it is in health care.

The saddest thing about these stories is that we have heard similar before. There have been commitments between increasing ‘compassion’ in nursing and care staff but the systems need to become more compassionate too and far more responsive and flexible.

This is a series of awful stories and experiences but they must be learning experiences so that some positive may come amid the extreme pain and grief caused.

Dementia Friends

The Department of Health has, today, launched the Dementia Friends scheme.

It’s a lovely scheme to promote greater awareness of Dementia by recruiting an army of  volunteers. These volunteers will be trained to have an ‘understanding of dementia’  As the website itself says, if you become a ‘Dementia Friend’

We’ll equip you with an understanding of dementia and how you can help, and the rest is down to you. We want Dementia Friends in every community – in every hospital ward, post office, place of worship, and on every street. Our target is to reach a million people by 2015, and we’re confident we’ll not only meet this target but will beat it

Wow, that’s great. Really it is. I’m (for once) not being sarcastic. I work with a lot of people with dementia and having to explain it to them and their family members, I see the fear and lack of understanding and I wish that there were a greater knowledge in dementia in the community and this seems to fit the bill.  In my social work training course, over two years, I had one lecture on older people – I can’t even remember if dementia was mentioned. That’s plain wrong. It needs to be a meaningful part of every training programme and on many courses.

First I thought Dementia Friends would be like a massive new befriending scheme for isolated people without family and friends and excluded by community  as the site says

Alzheimer’s Society research found that nearly two thirds of people with dementia feel lonely, and almost half reported losing friends following their diagnosis. With one in three people over 65 developing dementia, it’s vital we change this picture.

But reading more I see its  about encouraging people who are Dementia Friends not to abandon those of their family, friends and social circles who have dementia and  not to ‘drop’ them as the illness progresses. Which is also a very good goal.

I guess I just see a disproportionate amount of people who don’t have family/friends/social networks or maybe I’m seeing them after their networks have abandoned them.

Early Diagnosis

One of the aims of this scheme is apparently to encourage earlier diagnosis of dementia. Again, a very laudable aim. The Guardian previews Cameron’s announcement

Cameron will say: “Through the Dementia Friends project, we will for the first time make sure a million people know how to spot those telltale signs and provide support. There is still a long way to go in fighting the disease, but together we can improve the lives of millions.”

…

The scheme will provide free coaching sessions on how to spot the signs of dementia and provide support to people with the condition.

Each Friend will be awarded a special “Forget-me-Not” badge once they have completed their training, so that they can be easily identified as being able to assist people with dementia.

So when the dementia (and remember there are lots of causes for forgetfulness and confusion other than ‘dementia’)  is ‘spotted’, I imagine the hope is that the Dementia Friend will encourage the person they have potentially ‘spotted’ to get screened.

All good. Again back to the Guardian which says

The rate of successful diagnosis is expected to double from 42% at present to 80% – a target set by Cameron earlier this year when he launched his challenge.

Healthcare professionals will also be required to ask all patients aged between 65 and 74 about their memory as part of their standard health check. Simple diagnostic tests will be expected to be done on site, cutting waits that at present can be as long as 18 months.

Post Diagnosis Support

So we are able to identify and diagnose dementia earlier. Really that’s great. It allows people to have more time to adjust and to make plans regarding their needs in the future. We have more people who are aware of the needs of people with dementia in their own social circles and prepared, we hope, to be more tolerant and supportive.

However we can’t allow the happy clappy Department of Health talk to get away with the fact that dementia services and provisions have been slashed to bare bones. There is little left to provide to people who have early diagnoses, particularly if they don’t have that family support because the resources just are not there.

I’m all for early diagnosis if people want that (and not everyone does but that’s an individual thing) but if this is the same government that has launched a savage attack on local authority social care services which were barely fit for purpose at the best of times then I can’t help but be cynical about some of these provisions.

I’d like to see more research and provision of different types of care both in residential settings and at home so we aren’t at the mercy of large private companies creating ever larger residential and nursing homes in suburbs where the cost of property is low that house up to 80+ residents with dementia in places that are difficult for family to access without cars.

I’d like to see some of this ‘dementia challenge’ money put into allowing local authority assessments to build cost of non-directed advocacy into support planning – that would make an immediate change in the quality of life of those with dementia.

I’d like to see some honesty around the poor quality care for people with dementia currently in social care and hospital settings. Maybe some of that money could be invested in paying care staff better and more importantly improving training.

Big Society

This is very much a ‘big society’ volunteer type role. Good luck for those who participate. I’ll likely join up myself but lets not forget that this means distribution of volunteers may not be equal and those who have no community as such will not have the same benefit of access to these who volunteer.

So a good initiative and well done but lets not forget that if the government aim is to increase diagnosis, they have to be prepared to put more money into improving what happens and what support is available after diagnosis.

A Culture of Care?

I can’t help it but I’m somewhat unimpressed and uninspired by claims that Castlebeck’s transformation is nearly complete (As reported by The Guardian).  I’m sure Mr Sullivan has done a sterling job in dragging the remains of homes such as Winterbourne View towards acceptable standards but the very fact that such poor standards of care are evident in contemporary care is a shameful indictment on our society.

It riles me not only that such abuse took place in the first instance, but that it wasn’t picked up by the care provider.  Would the abuse still be happening if it were down to Castlebeck to identify it and take action?  I shudder to think that the answer might be a resounding “Yes”.  Also to think what else may be happening within care homes across the UK where vulnerable adults don’t have the benefit of family involvement or carers with the insight to blow the whistle on abuse … or Panorama!

 Having worked with numerous residential and nursing homes, it is not hard to see how totally dependant some vulnerable members of our society are on those paid to provide good quality care:  Care that is monitored and regulated and where safeguarding policies are in place to ensure that those who can’t speak up for themselves are protected from abuse… Really?

I can’t help but recalling one particular home, the manager was sitting in a very well equipped, spacious office when I arrived congratulating herself at the marvel that were her new, glossy brochures. Showing prospective families just exactly how decent the home was with its ample garden blooming with flowers and general good cheer.  Carers smiled on the front cover in a manner that exuded quality, person-centred care from more carers than one could possibly need whilst care-free residents tucked into their gormet meals.

Sadly, the reality was very different:  Insufficiently trained carers that didn’t have the time to answer a call-bell that had been rung for the umpteenth time as the room’s occupant continued to lie in urine soaked sheets.  Then there was the missed opportunity after missed opportunity to spot pressure wounds that were silently getting progressively worse – out of sight, out of mind.  All the time, the owner continued to congratulate herself and confidently sell the homes’ services to prospective new residents and their families.  Oblivious to the reality that was unravelling the other side of her plush office door.

Of course, such business’ need to be well run but when business comes before quality of care something needs to change.  Whole cultures need to change because if the underlying ethos of a home’s manager is developing a thriving business, how can the ethos of carers within that home be anything different … such as caring perhaps.  Whilst I’m all for serious case reviews and learning from past mistakes, I’m not convinced my ministers’ exclamations that, “We must learn from this so that these things must never happen again!”   I fear that they will happen again … and again until the whole culture of care changes to one of … well, care.

I can recall perhaps just a handful of small care homes where the managers rota themselves on shift so they know what’s going on and can identify any training needs.  Where more money is spent on care than on prtraying a good image to prospective new residents.  They may not be glistening with a new coat of paint every 6 months or benefit from TV advertising but they are run with an underlying ethos of care and respect and reflect far more the brochures that are displayed elsewhere, but they don’t have their own glossy brochures.  All they have is a good reputation which gets them by more than adequately.

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

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:

• National Framework for CHC Funding 
• CHC Practice Guidance

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.