Jon Cruddas visits Shared Lives in Newham

This is a guest blog from my colleague Tris Brown (tris@sharedlivesplus.org.uk):

Members of Parliament are used to meeting important and impressive people, but Shared Lives people have a habit of impressing them more than most.

Jon Cruddas, the Labour MP for Dagenham credited as an architect of Ed Miliband’s ‘One Nation’ vision, is no exception.

Last Friday, he visited Newham and as well as seeing a number of projects in the area, including a micro-enterprise initiative, he spent time with a group of Shared Lives carers and service users.  Jon connected with the idea of family life being a route to inclusion immediately, likening it to his own upbringing with many siblings and other relatives.

One of the people present, living in Shared Lives, told a powerful story about how his “life was hell” before he moved into the house of his Shared Lives carer.  After the turbulence of his previous family life, his Shared Lives arrangement has allowed him to find himself, growing and developing his own personality.  Shared Lives carers present talked about how the people who live with them have been able to develop and learn new skills – often those we take for granted, like cooking – for the first time.

Like many people encountering Shared Lives for the first time, Jon Cruddas was at times visibly stunned by the powerful simplicity of what he was hearing. When you take a moment to consider the obviousness of using families to look after people in their own communities, and the potential that universally available resource has to change public services, it takes some digesting.  “Amazing – they are the future,” he was heard to say afterwards.

The visit was part of a day exploring Newham’s ambitions to create ‘community resilience’, which is being led by Newham’s mayor who believes the council has a key role to play in boosting the borough’s ability to bring every citizen together to focus on improving their area. Newham intends this to be a transformation which doesn’t just motivate more people to volunteer, but to touch the lives of everyone living in the borough.  Newham’s commitment to Shared Lives is a part of this, and its Shared Lives carers demonstrate what it’s possible to achieve.

 

The Care Bill – first thoughts

The government has published the Care Bill, which was published in draft form as the Care and Support Bill. The draft Bill set out some positive changes to social care, attempting to make the system more future focused and preventative, with more scope for assessments and processes to consider what people can do for themselves, particularly at an early stage, as well as what services can do for them. We think a system of this kind creates the space for approaches which focus on supporting family and community contributions and community development, which fits the ethos of our members, who deliver Shared Lives, Homeshare and micro-enterprises, very closely.

We had a number of conversations with the Bill team and the Joint Committee scrutinising the draft Bill, which made lots of very positive recommendations. The Joint Committee Chair, Paul Burstow, chaired a roundtable at RSA where we discussed strengths-based approaches and he wrote the foreword to a pamphlet, the New Social Care: strengths-based approaches, published by RSA which I edited (www.SharedLivesPlus.org.uk).

So have any of the changes we were arguing for happened?

In summary: yes. Councils will in future have to fund or commission agencies which reduce or delay the risk of people needing care and support (Clause 2). There should be much more useful information provided to anyone at risk of needing a care service (Clause 4). Whilst the Bill does not categorically set out the wide entitlements to up-front planning support, regardless of eligibility tests, for which we argued, the Bill and the accompanying explanatory note are clear that the most recent changes are intended to ensure that the Bill is the bones of an ‘assets’ or strengths-based approach which can be fleshed out in regulations and guidance.

My initial conversations with colleagues in the sector have tended to be about whether the new parts of the Bill which are intended to maximise the resilience of individuals, families and communities, create a risk

Conspiring to make things better

Comedy writer for ‘The Thick of It’, Ian Martin, recently wrote in the Guardian that:
“In my experience, NHS bureacracy will conspire to kill you”. However, his following point was, “In my experience, NHS staff will conspire to save your life.”

Martin is a satirist, so this is not necessarily a fair and balanced description of NHS systems of course, but many a true word…

Systems are only really people of course. Even in this day and age, we don’t have many interactions with the NHS which are entirely with a computer or machine, with no human input. Systems are ways in which humans behave and interact when they are put together in a particular way, usually one designed to ensure that large numbers of people act with a common purpose. That common purpose is rarely to harm us of course, but it too often feels that way, with the good things that people do feeling like transgressions.

If we can understand how to help people act with common purpose without that purpose starting to feel corrupted and corrupting, we will have a social care system where the words ‘social’ and ‘system’ don’t feel in eternal opposition.

Integration or co-operation?

I’ve been in a couple of roundtables recently in which the Labour party has outlined their plans for integrated care. It’s fairly broad and high level stuff at the moment, but a key part of their proposal is that health, care and perhaps other aspects of the welfare and support system will be integrated with a single budget, with, as I understand it, councils in the lead on commissioning (presumably using the new Health and Wellbeing Board structures) and NHS organisations acting as delivery bodies, with less emphasis on increasing competition from independent providers.

It’s an alluring idea, which addresses a split between health and social care which has never ‘worked’ and was hotly debated when the NHS was created in 1948. Back then, the NHS could focus on illness treatment and most people got any ‘social care’ they received from their families, not the state. Now the NHS and social care need to be effective and sustainable for massively increased numbers of people with manageable long term conditions, not short illnesses likely to be either treated or fatal.

I’ve blogged before about the need to integrate not just services, but the informal/unpaid support system and the formal/ paid service system. An integration of health and care will not automatically achieve this. A recurring phrase in today’s discussion, for instance, was ‘patient rights’. There was a little, but much less, about citizens (not patients) and shared responsibilities. It would be easy to integrate around the existing public services power bases of hospitals and professionals, not around individuals, families and communities. This would be to integrate illness treatment services, not health and well being (eco)systems.

The language of rights in relation to health and well being is interesting. Charities and politicians alike are more comfortable talking about rights and entitlements than about responsibilities. This can mean that charities contribute to ‘clientism’ and that politicians can’t deliver on promises.

We chose each other

This guest blog was kindly written by Jenny Smith for Shared Lives organisation, ategi. ategi runs schemes in Wales and Buckinghamshire. For films of ategi’s work, click here.

Angela is an ategi Shared Lives Carer. She and her partner Tina share their home with Debbie and Linda, two ladies with learning difficulties who, until they moved in with Angela two years ago lived almost all of their lives in care homes.

Although Angela’s background was in care work, she was working as a cleaner at Aylesbury’s Young Offender’s Institute when she saw the ‘ategi Shared Lives’ advert. She remembers that it said: ‘Can you give a loving, caring home to someone?’”

It seemed to make perfect sense. With Angela’s three children having left home, she and Tina were living in a four bedroom house. Angela wondered if this was perhaps an opportunity to go back to doing what she had always enjoyed most. Caring for people.

Encouraged by Tina, and by her friend Jen, Angela made contact with ategi. There were various important processes to go through before Angela could be accepted as a potential Shared Lives carer – to make sure that everybody’s wellbeing was taken into consideration and that their home was suitable.

Angela remembered a heartbreaking incident she witnessed in residential care, when two elderly ladies who were good friends were split up. One was sent to a different residential home and died only a few weeks later. Remembering this, Angela told Ategi that she would be happy to accept two people who might be unhappy to be separated.

Before coming to live with Angela and Tina, Linda and Debbie lived in residential care for almost all of their lives. Neither had ever completely settled anywhere. When they first came to live with Angela and Tina, they did not talk much, and often found it difficult to make eye contact.

Angela felt for Linda and Debbie, as she herself was painfully shy as a child.

“I understood how they were feeling. But they’ve changed so much since they came to live with us. They dress differently, they act differently, it’s a joy to see.”

Angela, Tina, Debbie and Linda now live together just like any other family. Cooking is a joint effort. They watch TV together in the evenings. They’ll have meals out and day trips. Debbie loves drama, she often sings and does very good impersonations. Linda enjoys arts and crafts.

Like any family, they have different timetables. Angela looks after her baby granddaughter Ellie on Tuesdays and Thursdays, Linda and Debbie go to day centres a couple of days a week and Tina works full time.

There are plenty of visitors, including Angela’s children and grandchildren. Angela’s daughter Becky brings Ellie to visit regularly, and Debbie and Linda love having a baby in the house. Relatives and friends often join them for Sunday tea or a Sunday roast. It’s a busy, happy household.

Angela and Tina make use of ‘respite care’ several times a year. While they have a break, Linda and Debbie will stay with a short-term ategi carer, who they know and trust.

Debbie and Linda’s lives have been transformed since they came to live with Angela and Tina.

“I am much happier living here,” Debbie says, “in the other homes I did not feel loved, and people were mean to me. Now I have a family who love me, and I love them.”

The household also share their home with two cats, Leo and Slinky. Leo came from a family around the corner, but he decided that he was happier with Angela, Tina, Linda and Debbie. It turned out that this suited everybody concerned, so he was allowed to stay.

“He chose us,” said Angela, smiling, “just like we chose each other.”

Saving money or seeking outcomes?

A guest blog from Simon Taylor (simon@sharedlivesplus.org.uk), who supports our micro-enterprise members:

Delegating decisions in care and support

Last week Think Local Act Personal launched its report on making the best use of the available resources when developing adult social care. It highlights options which could save councils money when other traditional costs saving methods are exhausted. This debate underlines the delicate balance councils must manage. Many unfortunately use remote senior managers or panels to maintain control over the money. All too few delegate decisions to front line workers to try and avoid costly red tape. The report identifies how councils can evidence the benefits of options like delegation to encourage them to use such approaches. www.thinklocalactpersonal.org.uk/Latest/Resource/?cid=9444

My initial reaction was astonishment that some local authorities struggle to release control to the professionals in their employment and are unable to understand the cost implications of their approaches.  The excellent report and toolkit developed by Think Local Act Personal working with the Towards Excellence in Adult Social Care Programme is a start for councils to consider and implement change.  

However, we need not only to hand power to front line workers, but also to people who use services so that they can be at the heart of decision making.

We need also to look beyond cost reductions. Delegation

The Joint Committee reports on a new care laws

Update to the original text: I’d read “We agree” in paragraph 29 as referring to all the points made earlier in the paragraph where it is reported that the law commission and others argued for a statutory footing for resource allocation systems. In fact, the commitee agreed only with Richard Humphries’ point in that paragraph about a muddled of picture of 152 allocation systems as is clear from the later recommendation in bold. Paul Burstow MP, the committee’s Chair, kindly clarified this: “we only recommend placing RAS on a statutory basis for the purpose of arriving at notional costs [for Dilnot care accounts - see below], not for determining the amount in a personal budget.  On the more general use of RAS we recommend in para 204 that the “Government should review the efficacy of RAS and ensure that the code of practice or guidance makes clear that the development and application of any methodology for calculating the cost of meeting eligible needs is transparent, has regard for the well-being principle, and is subject to the duty to meet eligible needs.”" Some text below amended accordingly.

The Joint Committee chaired by Paul Burstow MP which has been examining the draft Care and Support Bill has reported today.

One of the most interesting aspects of the report is what it has to say about Resource Allocation Systems, which are the complex sets of calculations (algorithms) which turn an assessment of need into a cash amount to pay for an individual’s services. The recommendations taken individually are very sensible. For instance, the committee urges the government to put beyond any doubt that nobody’s resource allocation should be reduced because of the presence of a carer, without having gained that carer’s consent to carry out the caring which is seen as reducing the need for state funded support.

The committee identifies the fairness and transparency of Resource Allocation Systems as a crucial part of the delivery of personal budgets and Direct Payments and suggests that a RAS will be just as crucial to developing the “care account” by which the amount and individual is seen as having spent on care will be totted up under the new Dilnot system of capping the maximum amount anyone has to spend on care. The Dilnot system will not add up what a person actually spends, which could vary according to the care provider they choose to use, but will instead be based on a notional spend, proportionate to their level of need and typical or expected support costs for someone with their level of need.

The committee agrees that having 152 different resource allocation systems is “muddled”. This is part of the current “Ordinary Residence” problem, in which non-transferable care packages can stop people from moving from one council area to another for fear of losing an existing care package and the committee notes that this challenge will extend to those with a “care account” unless there is a national system.

This shows how far away from the original brief the reform of care laws has come. When the Law Commission was charged with tidying up and modernising social care law, it was very clear that it had not been given a brief to draw up a law for personalisation. Of course, sweeping away all existing social care law, was an opportunity for precisely that – why would we just tidy up a law which fits badly with the vision for a personalised social care system? – and the committee are calling for the new system to be built around personalisation.

Personal budgets and Direct Payments are of course just one aspect of personalisation. I can see a risk with establishing RAS