Never being lonely

The PSSRU team at Kent University have published their research into Shared Lives for older people, which you can find in Working with Older People, here.

Whilst the study was fairly small (150 people), the results were overwhelmingly positive. They say,

‘Shared Lives would appear a good “fit” with the on-going personalisation agenda .… Most of the respondents cited support from Shared Lives as the reason they felt more independent, due in part to being able to exercise choice and control in a home environment. A surprising number of respondents also specifically highlighted the positive impact Shared Lives had on their mental health and emotional well-being which was exclusively linked to the supportive relationship they had with the Shared Lives carer.’

Being matched with a consistent Shared Lives carer with whom they could have a long term relationship (either visiting regularly for short breaks or living with their chosen Shared Lives carer as part of the household) this increased opportunities for social contact, with “never feeling lonely” explicitly mentioned as a benefit. People regularly described this as life changing: For one participant, Shared Lives means “to have company around me, friends are my life.”

Whilst it was important to people to be able to take part in activities, it was equally important that they were doing them with people they had chosen and now knew well. The authors quote research that shows, ‘Well-being in later life is less about what older people do, but rather of who with and how they feel about them (Litwin and Shiovitz-Ezra, 2006).’

People in the study said:

‘Every day I have activities to go to. Without the support of the family I live with I wouldn’t be able to do this. (female, 68 years old, long-term placement).’

‘Because I have difficulty walking am house bound and the weekly outings give me an opportunity to be in the outside world again. (male, 83 years old, day support).’

Read the full article at http://www.emeraldinsight.com/doi/full/10.1108/WWOP-03-2016-0005. Our thanks to Nadia Brookes, Sinead Palmer and Lisa Callaghan and to Working with Older People.

Little miracles

I’m grateful to Anne Watts for getting in touch to share a little about her inspiring lifestyle, built around caring for others, which she writes about in her blog (eg The Blue Dictionary and The Woman from Belgium) and books which you can find here: www.annewatts.co.uk . Ann’s way of living has elements of both Shared Lives and Homeshare. It seems extraordinary, but I wonder how many others live in this way or as Anne suggests below, would be willing to? Anne says of Shared Lives:

“Like all the best ideas, it is simple, straight forward and provides fertile ground for the little miracles of healing and kindness  that carers see every day, and  you certainly do in your work.

My back ground is in nursing (50 years of it – and going strong). Since returning home in 2000 I saw how there were great yawning gaps in the caring profession, not being adequately addressed, just tinkering around the edges over the ensuing years.

The inadequate warehousing of the vulnerable in society; those with mental health issues, the disabled and the elderly – were unacceptable and I wondered what I could do to help in an effective manner.

Beginning with an elderly relative who was frightened of going into hospital or a care home, I moved in and cared for her within the stable, secure and much loved home she had shared with her recently deceased husband. She flourished, became her old self, had a quality of life she began to enjoy again and died peacefully at home, with family around her, two years later.

Immediately I was inundated with requests from people to care for their parent etc. And have done this now for some 10 years.

I am paid in free board and lodging and minimal expenses. In return I live in, shop, clean, cook, drive, and re introduce people to life again. No more sitting alone all day, waiting for a carer to rush in at any given time to give very basic hygiene care.

With a live in carer who can see the life not being lived clearly, there are drives into the countryside, walks, picnics, visits to old haunts, nutritious food, whizzing down the aisles of the supermarket choosing long forgotten favourite foods to enjoy.

Watching someone come back to life is the greatest remuneration there is.

99 year old Eileen had shared many a holiday with her husband in Spain. Since his death (they were married 72 years!) her life had shrunk to sitting alone, waiting to die. Her family were afraid when I suggested taking her back to Spain for one last holiday-“what if she dies on the plane ” etc.”

So, I took her to Sainsbury’s, she chose olives, tapas, red wine and we had regular Spanish picnics in her garden. She always blossomed into the giggly young bride she had once been as she told me all about the times she and her beloved Frank had enjoyed in Spain.

I drove her down to Cornwall to attend her grand daughter’s wedding. She loved it and we stayed three days. She was still talking about the champagne a few days before she passed away 8 months later.

Living life right up to the moment you die – that’s what it’s all about.

Now I live in Oxfordshire, caring for an 80 year old gentleman for whom Parkinson’s Disease is tightening it’s grip. The worry and stress of fearing admissions into hospital have dropped from his face, and the certainty that he is now safe in his own home has given him a new lease on life.

So, I am living the Shared Life ethos in reverse I suppose. I do not have a home of my own, having lived my life helping others in so many ways, but now can offer my skills in this manner. I have been overwhelmed and shocked at the response and requests I field whenever it becomes known that I am ‘available’. The need is all around us – as you well know.

But they can be addressed, a step at a time.

I just wanted you to know I’m out here – and there will be many others who can do what I am doing. Keeping elderly folk out of hospital beds, and fretting about nursing home costs/standards of care and loss of independence.”

www.annewatts.co.uk

 

You made us feel important

Thanks to Cathy Gregg, who manages the Shared Lives scheme in Richmond, who shared (with permission) this letter from a family member whose mother uses Shared Lives:

Dear Cathy,

I just wanted to put in writing my thoughts about the Shared Lives scheme.  I have to praise everyone involved for the caring, thoughtful and professional way in which they have treated myself, my husband and my mother.  The whole exercise has been done so lovingly and I can’t thank you enough for the way you have all made us feel so important.  It makes such a difference to know that we are not alone.

Maggie has been an absolute rock and I appreciate everything she has done.  Pam, and her family, are just delightful and Mum had the most wonderful time with her recently and cannot wait to visit them again.  I was able to relax knowing that she was in a safe environment where she would be happy and well looked after.

I think the Shared Lives scheme is fantastic and I would like you to pass my thanks to Richmond for taking this on board.  Long may it continue to help and support people.

If you want to find out more about how Shared Lives is providing day support and short breaks for older people, contact Sue@sharedlivesplus.org.uk

New research on Shared Lives and older people

Our Director of Support and Development, Anna McEwen, writes with an update on the launch of new independent research into Shared Lives for older people from Kent University:

89 year old Betty described Shared Lives as a lifeline, allowing her and her 91 year old husband with Alzheimers to keep their dignity as they aged.  Betty got to know a Shared Lives carer who supported her for a few hours a week.  The Shared Lives carer got to know Betty and her husband which meant that when Betty had to go into hospital suddenly, her husband was able to go and stay with the Shared Lives carer.  This gave Betty peace of mind and her husband a personalised short break with someone who he knew well at a difficult time when his wife and main carer was in hospital.

PSSRU (Personal Social Services Research Unit) at the University of Kent have recently finished a 2 year research project looking at Shared Lives as an option for older people who have social care support needs.  This project was funded by the NIHR School for Social Care Research, and began before Shared Lives Plus offered dedicated support to schemes developing this area of work.  The work was not commissioned by Shared Lives Plus but in response to wider work around personalised services that deliver good outcomes at low cost. It builds on the interest and learning generated by an earlier dementia project led by Shared Lives South West and Innovations in Dementia.

The research consisted of questionnaires sent out to all older people using Shared Lives at the time to get a sense of the quality of life people using Shared Lives were experiencing and their views on the service, and then some more detailed work with 3 schemes.  The questionnaires on quality of life were compared with people using other social care services via the Adult Social Care Survey to establish the quality of life of older people using Shared Lives when compared to other forms of social care.

74% of older people using Shared Lives rated their quality of life as good or very good, and just 4% rated bad. When compared to other forms of social care and average social care quality of life (based on ASCOT), older people using Shared Lives had better overall quality of life on a par with people who do not require social care support.

Barriers highlighted by the research for expansion of Shared Lives for older people included: lack of referrals, lack of awareness of Shared Lives, familiarity with other (more traditional) social care services, budget structures and pressures in local authorities, eligibility criteria, lack of Shared Lives carers with appropriate accommodation and/or skills and perceptions of safety & accountability.

Opportunities for expansion of Shared Lives for older people included: active promotion of Shared Lives, awareness raising to social work teams, specialised training for Shared Lives carers, support from senior managers, Care Bill implementation and evidence of the benefits of Shared Lives.

This research took place at a time when Shared Lives was still a little known option for older and disabled people, and Shared Lives Plus was a tiny organisation supporting the sector.  The samples used to compare quality of life were very small and there were a number of limitations to the research because of this, although the research clearly shows how much Shared Lives is valued by the older people currently using it.

However, if the research was repeated starting in 2014, I think we would start to see a much bigger picture.  Shared Lives Plus has secured funding to offer dedicated support to the sector to develop services for older people in the form of a development officer and production of a series of tools, resources and business cases to support Shared Lives carers, schemes, commissioners and external providers.  This support has kick started a dramatic increase in schemes who are now diversifying to offer support to older people and people living with dementia, and we expect to see the numbers of older people using Shared Lives rise significantly over the coming years.

This research gives us some really useful and interesting baseline information to start from as we seek to support the development of the Shared sector, and the quotes from older people using Shared Lives speak for themselves:

“Being made to feel part of a family gives me confidence, a feeling of being wanted and not alone.”

“Shared Lives gives me something to look forward to and a purpose in life”

“It’s a lifeline, it’s contact, it’s help to live, it’s support and very valuable”

“Living with a couple in Shared Lives keeps me out of hospital.  If I am troubled with anything I can talk about it with my carer who encourages me and completely supports me”

A patchwork quilt

Think Local, Act Personal, the sector-led partnership which is helping providers and councils to push forward with personalisation, has teamed up with SCIE to publish “Improving Personal Budgets for Older People: A Review” which you can find here: http://bit.ly/YyWRZR. Some of the findings are based on data from the ADASS personalisation survey (2012) of councils and the 2011 POET survey which is a large annual survey carried out by Think Local, Act Personal of people’s experiences of personal budgets.

It’s quite common to hear people say “personal budgets and Direct Payments don’t work for older people” so it’s useful to have some real evidence to look at in testing whether those doubts are based in reality, or in assumptions about older people and choice. The report finds that in some areas many more older people are using personal budgets, so the argument that older people aren’t interested or can’t use personal budgets does not seem to hold up. However, that picture is really patchy and the report finds lots of barriers to older people taking up personal budgets, including confusing processes and lack of support to make choices; lack of understanding about the things personal budgets and direct payments can be spent on (not just Personal Assistants) or little real choice of new provision; and reluctance on the part of older people or their families to take on responsibilities like being an employer. All of these factors are relevant to younger people as well as older people, but perhaps the most telling differences are that some of the powerful features of using a personal budget for younger people – such as taking that budget as a cash Direct Payment and having complete control over a care package or a team of staff – appear not to be so relevant or available for older people, who are often working with lower budget allocations and who may be looking for quality and consistency of service above control for its own sake (although the report cautions against the risk of these conclusions being influenced by ageist assumptions.

Of course, if the high numbers of older personal budget holders in some areas were present everywhere, we would be talking about how well they work for older people. The apparent success in some areas could mean that

Red tape cut for care and support services

You spend a lot more time lobbying for change than seeing it in our line of work, so today’s new guidance from the Department of Transport, which should make it much easier for care and support services who transport people as part of their wider work, is a rare victory. We’ve been campaigning on this issue for years. Here’s an example of why it matters:

Companions is a micro-domiciliary care service established to provide consistent, responsive and flexible care for a small group of older people, who pay for the service from personal budgets or their own money. The providers consulted widely with potential customers before setting up the service. These older people found it difficult to use public transport and were essentially confined to their homes, isolated and lonely. Top of their ‘wish list’ was help to go out into the community and to meet their friends. Companions designed a service which included using their own cars to take people out but were told that they would have to be licensed as private hire vehicles. The costs and complexity of obtaining a licence were insurmountable, so they have, until now, not been able to provide the service most desired by their customers.

The new guidance takes a pragmatic approach to clarifying a complex area of law, from which other departments could learn. This change may seem dry and technical, but it will result in many disabled and older people being able to get out of their houses for the first time in years.

This will be one of the important regulatory changes highlighted in the new ‘map’ for micro-enterprises which NAAPS UK is developing with support from government and which will be published in the Autumn. You can find out more on the news page at www.naaps.org.uk

 

 

Care: industrial scale or cottage industry?

There are, we are often reminded, 30,000 residents in Southern Cross’s care homes. There is an argument about to what extent it would affect those residents if Southern Cross’s approach to funding its expansion, which relied heavily upon property speculation during the boom, ultimately led to its demise as a company.

Some people say it wouldn’t make any difference to residents – if a care home is viable it will simply be sold on to another provider. The Association of Directors of Adult Social Services have emphasised the need for councils to continue sending residents to Southern Cross homes to keep the company afloat.

But if it makes no difference to residents whether or not the company stays afloat, then why does it matter if it continues to have enough ‘customers’? Whereas, if Southern Cross going bankrupt will make a difference to them, then it cannot be in an individual’s interests to be “sent” to one of their homes. 

Individuals are not commodities, to be traded by councils and care providers, even in the interests of what might be considered the greater good. Councils are under an obligation to individually assess older people and to support them to make the best choices about care for them. A blanket recommendation to push people towards a care provider which may not be able to offer stability is unacceptable.

I think it’s hard to maintain the argument that residents have nothing to fear from Southern Cross going bankrupt. In order to attempt to stay afloat, the company has just cut 3,000 front line caring jobs. In other words, here we have yet another situation in which rash decisions made in order to maximise profits result in negative consequences for people who had no part in those decisions. It was of course, those residents’ money (or in the case of those whose care was state-funded, taxpayers’ money), which was hived off in the good years into the pockets of bosses and shareholders.

The Southern Cross crisis, coupled with the Winterbourne abuse scandal uncovered by BBC’s Panorama, should initiate a pause for thought about the relative risks and benefits of industrial scale care and support

Too late for Big Society? Too late for personalisation?



This blog doesn’t get thousands of readers, so I’m hoping that blogging about the Big Society doesn’t see off those readers I have! It’s rapidly becoming a tiresome subject, with lots of hot air on both sides. But I’ve been drafting our response to the Public Accounts Select Committee’s inquiry into the Big Society and I was struck by the similarities in the debate about the Big Society and the debate about personalisation in social care.

It says something about the policy that the first question the Select Committee asks about the Big Society is: What the hell is it?

I think the Big Society combines two ideas, one uncontroversial and one political. The (hopefully) uncontroversial idea is that it would be a good thing if it people found it easier to help each other more and to contribute to their communities. The party political idea is that the state inevitably gets in the way of people doing this, and so we need a smaller government. Whether one agrees with this point or not, the big state/ small state divide is one of the few remaining clear divides between ‘left’ and ‘right’ in mainstream politics.

At a time of public service cuts, it is understandable that in the minds of many people, “smaller government” and “shrinking public services” seem like the same thing. But small government describes the aspirations of government and its decision-making powers, particularly the extent to which central government controls local government, and local government controls communities. Whilst cuts are a question of how much is spent providing or funding local services.

The view in our draft response to the Inquiry (it’s not been sent in yet, so your views are welcome!) is that it would be a great pity if the debate about cuts precluded a sensible discussion of where the state should draw back, move sideways, or indeed step forwards and intervene to help. Whilst the overall size of the state is a party political issue, there are undoubtedly areas in which there could be cross-party consensus on the desirability of the state drawing back, or operating differently. And even the most “small state” and localising of politicians do on occasion advocate central government action to promote their preferred local approaches. For instance, the Secretary of State for Communities and Local Government, Eric Pickles, suggested to delegates at an NCVO conference that councils could be

The UK needs Homeshare

Yesterday, we launched the new Homeshare good practice guide and calls on government (download them at  http://bit.ly/hqZ7KL). We’ve had some good coverage in Community Care magazine:  http://bit.ly/fkNfAr (article) and  http://bit.ly/eGoLLd (my column).

In ‘Homeshare’, someone who needs some help to live independently in their own home is matched with someone who has a housing need and can provide a little support.

‘Householders’ are often older people who have their own home but who have developed some support needs or are isolated or anxious about living alone. ‘Homesharers’ are often students or key public service workers who cannot afford housing where they work. In a Homeshare scheme in Oxford, gap year volunteers live in with older people for mutual support during their first experience of living away from home.

The Homesharer provides an agreed level of help and support to the Householder whilst living in their home for an agreed period of time. Homesharers are not charged rent, but usually agree to contribute to household bills.

Gillian had a house; Neil needed somewhere to live. Gillian was worried about being alone and the responsibility of keeping things working; Neil, who does not own a home, was semi-retired, and could fix leaking taps. Gillian is 88, Neil 61, and they found each other through Homeshare. Today they share Gillian’s beautiful red-brick converted barn in a West Sussex village, with its beamed sitting room and fruit trees in the garden. No money changes hands, but Neil drives Gillian to doctor’s appointments and the supermarket and provides practical help around the house. He is a reassuring and useful presence, both physically and psychologically.

Gillian says, “We both put our names forward for Homeshare and, after vetting, it was decided we might be a good match. We met first in a neutral place, at the house of old friends of mine, then we had a couple of meals out. We haven’t got a terrific lot of things in common, but perhaps that’s why we get on. I think I get more out of it than Neil does.” (This story is from Agebomb – see the link in my blogroll).

There are 11 Homeshare schemes in six locations in the UK (see www.naaps.org.uk),  and we support the national network. Homeshare is small in the UK but much more significant in many other countries where there has perhaps been more investment and less red tape. So it was really encouraging to visit Crossroads Central and North London, who have just taken on the UK’s largest Homeshare scheme, which is supporting 80 matches very successfully and has big plans to develop the service. One of the reasons that Homeshare scheme has been successful

Is it time for time banking?

Last week I was involved in some Cabinet Office-sponsored discussions about a time banking project being introduced to a local authority area. The idea is to introduce a system to incentivise people to provide low level, good neighbour type support. It would involve helping people to connect with each other and then turning people’s support into credits, which they could use to access council services or leisure activities. In the example that was worked through in the proposal, a young person (‘Jonny’) helps out an older woman with her shopping. The lady has paper credits to give him in return and there is a rating system which lets people know how highly Jonny is regarded by the people he helps. Jonny takes his credits to his local youth club and they are exchanged for something with value (bowling in this case).

This is all very Big Society. Incentivising larger numbers of people to help out older and isolated people at low cost is a very attractive idea in a time of stiff budget cuts.

Timebanking is an elegant idea that should be everywhere, but somehow isn’t. Why?

One challenge for timebanking and the use of complementary currencies is the paradox that, by valuing something that someone does for mainly altruistic reasons, you risk devaluing it