Good care isn’t something that should have to be fought for

Yesterday I had coffee with a friend who has been having a very stressful time with her mother. It was the familiar story of care that was fragmented, provided without a great deal of thought, didn’t meet her mothers needs and has resulted in her being re admitted to hospital. As we talked she said what many people do in these circumstances “at least she’s got me, I don’t people with no one do, it must be awful”

I’ve heard that hundreds of times over the years working with older people services “thank god we were there to make sure mum wasn’t left alone/got seen eventually/the carers turned up/she got some decent food”

In the next 20-30 years, the to my mind at least, biggest untalked about demographic time bomb will hit care services. My generation of people in their 40s without children will start to need health and social care. A large % of us, certainly larger than previous generations will have no children, no one to provide unpaid care that is taken for granted by the State. We will have no one to point out as I have done for older relatives that promised grab rails haven’t been fitted or to accompany us to the hospital for tests or to just pick up some shopping when we’re too ill to do it ourselves.

When I tell people I can’t have children, sometimes, bravely they say “but who will look after you when you’re old?” I point out that actually have children is no guarantee that someone will look after you and anyway having children so they can provide unpaid care is a poor reason to have children.

But you know, I’ve worked in older peoples services for over 20 years. I know the reality of it. I know there is frankly bugger all help available until you’re almost immobile and unable to do even basic things for yourself. I know that ageism is rife, that people will look past you because you have grey hair and wrinkles, that without someone to fight your corner, getting any help is an uphill battle

And it it makes me bloody furious. Is it really going to be the case that just because people do not have children to look after them and fight their corner, that they’re condemned to some lesser tier of care? That those who have people shouting get better care because people in health and social care just want the shouters to stop? Whenever I stop and think about this, I feel the outrage building. Because it is outrageous! Good quality health and social care should not depend on whether you have been lucky enough to have children to push your case. The fact that it often is is utterly shameful in the 21st century.

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Why isn’t there an older peoples service in every GP surgery and A&E dept?

I think we’re all familiar with the figures by now but they don’t get any less worrying

  • over-75s account for one-third of the 5m emergency admissions each year
  • 60% of hospital beds are occupied by people over 65
  • 40% of those people have dementia
  • 66% increase in inpatient episodes for people aged over 75
  • A two thirds increase in the number of people aged over 90 attending A&E
  • LTC cost the NHS 77 billion pounds a year: One in three people currently have a LTC rising to half of all people aged over 60 and people with LTC also more likely to have corresponding mental health problems
  • Campaign to end loneliness research with GPs identified that three quarters of family doctors reported that between one and five patients a day attend their surgery primarily because they are lonely, 11 per cent of family doctors reported up to 10 patients a day who they think are lonely, and four per cent of doctors saw more than 10 lonely patients on an average day.
  • The Campaign to End loneliness research also found that (49 per cent) of the doctors questioned said they were not confident they had the tools necessary to help their lonely patients

I spent 10 years in the 1990s/early 2000s working as an advice worker and then a manager for Age Uk (Age Concern as it was then), and I went on to run a healthy living centre for older people in Camden. Since then as a consultant I’ve worked with organisations all over the country that provide services to older people. Out there are organisations providing advice on benefits, housing options, care services and a whole range of disparate topics. They provide visiting services, shopping, housework, gardening, handyperson services, social groups, holidays, falls prevention programmes, exercise classes, healthy living projects footcare, and home from hospital schemes.

The thing is, in all that time, I can count on the fingers of one hand the voluntary organisations providing these services who received significant referrals from GPs. I never got that many when I ran front line services for older people and other than in isolated pockets, it still doesn’t happen now.

I’m amazed that even now I can talk to a GP or a CCG commissioner about what services voluntary organisations provide and still be met with an incredulous “really? I had no idea!” It baffles me it really does! (I do of course accept that some of the blame lies with us for not being better promoters of our work).

Older people  are heavy users of the NHS; they go to their GPs a lot, a lot of the time with issues related more to poverty and isolation than a pressing medical problem. They can end up in A&E because there’s no support and get admitted to hospital because there’s no one to help them at home. Often they don’t need high end personal care, they just need someone to help them get home, make sure the house is clean and warm, that there’s food and to reassure them someone will be round to check on them tomorrow and the day after and for as long as is necessary.

It seems to me basic common sense that having a service for older people located in a GP surgery and A&E  (or if there isn’t room, something that can be accessed through the web or skype) that can deal with the issues around poverty, isolation and practical support would be a good thing. It would help lessen some of the GP workload, not just the physical workload but the mental frustration of wanting to help and not being able to.

It really doesn’t seem that difficult to to do either. Out there are organisations who are already running the services the NHS needs to help alleviate the issues around older people. Is it really so hard to get together to make it happen?

is it taboo to talk about Bad Trustees?

This blog was inspired by another blog, that of @MMaryMcKenna http://kickingassets.co.uk/5-immediate-improvements-we-can-make-in-the-charity-sector-2/

it really got me thinking about an issue I’ve felt uncomfortable with for a long time, namely the fact that some Trustees out there are well, just not up to the job.

I want to make it clear before I start that I do know that there are many brilliant Trustees out there. I’ve worked with them, I’ve been inspired by them and I hope when I’ve been a Trustee, the organisations I’ve worked with have found that I added knowledge and experience to the boards and helped the organisation achieve its objectives.

I have worked in and with the voluntary & community sector for about 20 years. In that time I’ve seen a lot of discussion about Trustees: how to get people to be Trustees, the relationship between the chair and chief exec, how to be a good Trustee but I’ve never seen anything that talks about the problem of Bad Trusteeship. By this I don’t mean Trustees who carry out criminal or fraudulent acts, I mean the ones that are ineffective, incompetent, unhelpful or just plain rude or nasty. I have to say I have thought a lot about whether to even write this as talking publicly about the fact that some Trustees aren’t up to the job seems pretty taboo. I’ve worried whether it could be used as a weapon by those people in Government who seem to be on a mission to undermine the voluntary and community sector at every turn. In the end however, I decided that this is something I feel very strongly about. It maybe just my experience, I may just have been unlucky but somehow I don’t think I am.

Below are just some examples from my own experience of Bad Trusteeship

  • A Treasurer who insisted the organisation must open a new bank account for every single project it did. They had 14 bank accounts and the treasurer moved money around between them all. No one but him had the faintest idea what was going on financially.
  • A Trustee who sexually harassed female members of staff at fundraising events and when the Chief Executive complained to the Chair about their behaviour was told that the members of staff should stop making a fuss and bring their husband with them next time.
  • The Chair of the organisation who thought the best way to deal with a complaint from a service user was to go round to their house and tell them they were no longer welcome on the organisations premises.
  • The Trustee who when talking about recruitment at a board meeting suggested that the organisation didn’t employ any women of child bearing age because “they’re always off sick or thinking about their children”
  • The Trustees of a sports association that owned a building where the fire doors were kept locked and blocked by sports equipment and who were using kitchen equipment to prop up lights dangling from walls.
  • The all male, all white board of trustees who when it was suggested that they need to diversify said that they had had a woman once but she never spoke and left after 6 months. This was taken as a sign that women just weren’t interested.
  • The trustees who when outvoted on organisational restructure leaked confidential emails to members of staff whose posts would be under review

Now none of the above is criminal or fraudulent, none of it could be reported to the Charity Commission but it’s hardly indicative of good practice. It’s certainly behaviour that is far less than should be expected of people who often are employers, own premises or assets and are responsible for large sums of money, often public money in the form of grants or contracts. It definitely in most cases contravenes the organisations own policies around equality and diversity or complaints or recruitment but if the rest of the Board don’t hold Trustees to account, then who else will?  And what if it is whole Board behaviour? Then what?

Does it actually matter if Trustees are behaving in the ways outlined above? Well yes it does, it matters because poorly governed organisations rarely provide the best outcomes for beneficiaries which is all that charities exist to do in my book. Charities routinely work with people who are disadvantaged, vulnerable or in need of help and support not available elsewhere. They deserve the best that organisations can give, “just good enough” is not enough and that goes for Trustees as well.

What we do about this I don’t know. The work of Young Trustees is a very good start as is CharityWorks but we need to do more. CVS are great at offering support and training around governance though their resources are increasingly under pressure and sadly it’s also been my experience that those trustees who need the most training and guidance are the ones least likely to accept it.

I don’t have any answers yet though I’m hoping other people might have suggestions but I do at least feel better for having got this off my chest.

 

Imagine if the public felt the same ownership for social care as they do for the NHS

“Tonight on the 6 o clock news, thousands protest as local authorities in an attempt to meet Government spending plans try to slash another 5% from social care budgets. There were angry scenes up and down town halls outside the country as campaigners vowed to fight until the bitter end “my mum would be dead if it wasn’t for social care” said one man “without them she’d have given up the will to live”. Another woman agreed “I used to worry I’d have to put my daughter into a home but with social services help, she lives in her own home and has a job. They’re brilliant! I can’t praise them enough!” The leader of the “care not cuts” campaign Ms U Topia said “the Government will not win on this; social care is like a religion for the British people. Without it tens of thousands of people would live lonely and vulnerable lives, dependent on the goodwill of family and neighbours. The British people will never let this happen”

And then of course back in the real world…..

Why is it that the mere mention of a closure or downgrade of a hospital has hundreds if not thousands of local people attending protest meetings, writing letters, going on marches, lobbying and generally making it known as vociferously as possible that they will not tolerate this happening. You can guarantee that the local MP no matter from what party will appear on the regional news with a grave face saying “this must not be allowed to happen, lives depend on the ability of people in Suburban town to have their NHS care locally where they need it”

Cuts to social care however, are routinely met with maybe a few tens of protesters, possibly if it’s something big like a care home a hundred or so, and the odd letter to the local paper. Local voluntary organisations will work together with service users and meet with the local council where they will be listened to sympathetically and then ignored. The wider public will be either totally unaware or completely indifferent.

The news today from the BBC that showed just 4 out of 101 councils paythe £15.19 per hour the UK Homecare Association (UKHCA) believes is necessary to cover wages, training and travel will come as no surprise to anyone working in or with social care. It is just the latest in a string of reports highlighting poor care and bad practice in social care. In Dec 13 the BBC reported that the number of people receiving social care had dropped by a quarter, in October 13 Leonard Cheshire published a report which got widespread coverage about the iniquity of 15 minute care visits and around the same time the equality and human rights commission said that care staff face poor pay, high pressure and a lack of support.

However, I expect that the response from the general public to this report will be (if we’re lucky) an “oh isn’t it terrible?” followed by massive wave of indifference. It’s not that people don’t care about the vulnerable, the frail and the sick but there is massive public disengagement from social care. Why? Why is it that the public feel so little ownership of social care, something they fund far more directly through council tax than they do the NHS?

There are I think 5 main reasons

  1. People haven’t a clue what it actually is or how it works. They may have a vague idea that a care assistant comes in and helps with things but they don’t really know how that might actually happen in practice.
  2. It’s hidden away. They don’t see social care happening. Most of it happens in people’s own homes or in buildings euphemistically labelled “resource centres”. They don’t come into contact with it unless they actually need it.
  3. They don’t understand how it’s funded or what it costs to deliver.
  4. Users of social care are amongst the most disempowered people in country. There has been progress over the years through user led organisations and personalisation to rectify this but service users views are still routinely downgraded, ignored or just set aside as “too difficult”
  5. People don’t want to think about getting old and frail or what it’s like to have a disability or sensory impairment. There is huge ageism in our society and a dismaying rise in disablism. It has to be said though, most people don’t want to think about getting cancer either but that doesn’t stop millions being raised from the public from cancer research.

In an ideal world, social care would be integrated with the NHS and funded centrally but that is unlikely to happen. I honestly don’t know how we champion social care and change the public’s attitudes so they feel ownership of it, and pride in it, but if we don’t, we’re in danger of having a system that will collapse.

NHS and the third sector – the most powerful partnership (or at least it could be!)

Type NHS privatisation into Google and it returns 981,000 matches. Ever since the Government restructured the NHS, the row over “privatisation” has raged. The Coalition Government has stated very clearly that in its view competition and bringing in independent providers will enhance the NHS and drive up standards.

Privatisation is an immensely emotive word; the root of it “private” is anathema to the NHS, a state run service free at the point of delivery. It evokes images of Big Corporate Bastard Health companies whose only aim is to squeeze as much money as possible from the NHS in order to pay ever larger bonuses and dividends to its share holder whilst simultaneously providing a cheap, inadequate and probably dangerous service for patients.

However, the government never says private sector, it says “independent sector” by which it means private companies, social enterprises and charities. As someone who has spent 20 years working in and with the third sector, this makes me very uncomfortable. I do not like the face that in arguments about privatisation, charities like for examples MIND, diabetes UK, Arthritis care or whoever are lumped in with the likes of SERCO and Virgin Healthcare. Yes both are “independent providers” as in they are not N HS bodies but private companies which exist explicitly to make a profit for share holders should not be in the same category as charities.

I do wonder though, for people in the NHS is an NHS service provided by a charity more acceptable than one provided by a private company? I would genuinely be interested in knowing.

Most people I know in the charity sector do not agree with the changes to the NHS and do not want to see large profit making private companies providing NHS services either. However, they also have to be realistic. The income of charities is under huge pressure. A poll published by the Charities Aid Foundation and NCVO in December 2012. Showed that charitable donations in the UK dropped by 20% in 2011-12 £11bn to £9.3bn during 2011-12. As a result, two in five charities (40%) fear they face closure if the economic situation does not improve, while one in four has axed staff. Other sources of funding such as charitable trusts are under growing pressure at a time when their own income is at best flat-lining. In 2013, Social Enterprise UK published research that identified that 92% of charities wanted to increase their income from trading and 90% felt that income from grants and donations would continue to drop.

Presented with such a difficult funding climate, most charities in the health and social care field will look at opportunities in the NHS and face a real dilemma; should they go for contracts to run NHS services that will bring in additional income and offer patients more choice? Or should they let them pass by knowing that private companies will go for them and could of course win them?

Personally, I cannot see the clock being turned back on NHS services being put out to tender. Already some 200 contracts worth over 2.5 billion have been put out to the market. I would like to see far more NHS and third sector partnerships working together to bid for services. This is happening in some areas e.g. Bedfordshire musco skeletal services though even there Circle are the lead contractor. The NHS and the third sector together could be immensely powerful sharing many common goals and views about doing what is best for patients and that that definitely comes before profit. How can we make it happen more often?