Beginnings and endings

At our annual conference, our Chair Richard Jones and I always hold a discussion session with Shared Lives carers and others, which is an opportunity for people to make sure we have the issues which matter most at the front line on our radar. Here are some of the issues which came up: they give a sense of why Shared Lives is valuable, what makes it unique as a way of supporting adults, and also some of the challenges and the ways in which we do not always value and back up Shared Lives households in the ways we should.

We heard from a Shared Lives carer who supports people with significant mental health problems. The people living with her could easily be living in medical institutions without her support and doubtless her care saves the NHS a fortune. During a late night crisis, she shared the poor response she had received from the local mental health crisis team. I won’t share the details, but the theme was a frustratingly common one: the value of Shared Lives comes from the fact that it occupies a hard to define space somewhere between ordinary family life and a service, at its best, taking the best of both worlds. But too often, the rest of a service system sees someone settled in Shared Lives, breathes a sigh of relief, and disappears. Good Shared Lives schemes offer well-planned out of hours support, but sometimes the response needed in an emergency needs to come from another part of the system, and these teams are not always even aware that Shared Lives exists. We believe that Shared Lives carers should be seen as partners by health and care professionals, with emergency plans in place to ensure that they can get an effective response. This is essential to make Shared Lives fair, safe and sustainable for everyone involved.

We also talked about endings. Shared Lives arrangements can come to an end for all kinds of reasons: the person may have achieved their goal of getting their own place, or their circumstances may change. Things may change unexpectedly in the Shared Lives carer’s household. People live together for decades, sometimes until one of them dies. There is no set retirement age and I meet Shared Lives carers who are now in their 80s. Sometimes, an individual who has lived for many years with a Shared Lives carer who is now ready to retire moves in with their original Shared Lives carer’s adult daughter or son, whom they may have known all their lives. But complete continuity of that kind is not always possible. The Shared Lives carers we heard from felt that the difficult topic of endings is one we need to talk about more.

Endings can sometimes be enforced by social workers who assume that the individual’s goal should be to move into independence. Sometimes this is right, but at others, we see people who were happy in a household they have come to regard as their family home being obliged to live by themselves, sometimes unhappily or worse. Not many of us dream of living alone, so we should be cautious about assuming that is always the right thing for someone with a learning disability or another support need and we should listen to their wishes and goals, without making assumptions about concepts like dependency, which we may not be so quick to apply to our own lives.

At other times, the inevitability of an ending is ignored until it is too late to plan effectively for it. Some Shared Lives carers say that they feel guilty about the idea of ending, even though they are ready to end their active caring role and perhaps need to for health reasons. We have more work to do in this area: ensuring that people living in Shared Lives households feel supported to talk about choices, including endings, and can plan for the changes they dream of as well as the endings they wish will never happen.

Shared Lives Plus Trustee wanted

It’s going to be an exciting day for us today, with our first ever Parliamentary event this evening, hosted by Liz Kendal MP, with Norman Lamb MP and Nick Hurd MP dropping in as well to meet Shared Lives carers and the people they support.

Meanwhile, Shared Lives week seems like a good time to mention that we have a board vacancy for one of our co-opted Trustee places.

Our board of trustees includes four trustees nominated by our national committees, two Shared Lives carers and an equalities champion. Our Chair is Nancy Plowes who manages the Bradford Shared Lives scheme. We have two co-opted board members, one of whom is Richard Jones who works in senior leadership in the NHS and is a former ADASS President. The other position has become vacant following the end of a three year term of office of Stephen Burke, former CEO of the national charity, Counsel and Care.

Our board oversees the charity’s work, setting the strategic direction, supporting the CEO and senior managers, ensuring resources are well-used and occasionally acting as ambassadors. We are seeking a trustee who has experience of senior leadership, a deep understanding of the challenges facing our sector and who can help us build our networks and connections. The board meeting quarterly in Birmingham, one session including an overnight stay, and Trustees are expected to make at least two of the four meetings. Skills currently underrepresented on the board include experience of the private sector; experience of communications and media; and links to the corporate world and potential donors. We are also keen to increase the diversity of our board and would welcome applications from people from black and minority ethnic communities.

For more information please email info@SharedLivesPlus.org.uk or call 0151 227 3499. Our Chair can be contacted on nancy.plowes@bradford.gov.uk.

See more at: http://www.sharedlivesplus.org.uk/about-us/jobs#sthash.OWvwpaSP.dpuf

Helium balloons at the AGM

 

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

Inflation at the AGM

A fascinating couple of days: Shared Lives Plus is now 20 years old and the staff team are inflating helium balloons to deck the tables set for dinner after the Annual General Meeting. Our production line is only occasionally frustrated by the loss of a balloon and its ribbon into the lighting space above the conference facility. Based in Liverpool, the town of our head office, the celebrations and the AGM went splendidly and the following day’s conference also exceeded our expectations.

Celebrations and successes

The celebration focused on the huge steps made in the reach of the Shared Lives model, embodied in ‘Shared Lives Week’ events: www.sharedlivesplus.org.uk/en/conferencesevents/shared-lives-week/.  Also my own area of concern, for the micro-enterprise providers of care and support, was not forgotten and I was up early the next day to finalise preparations for my workshop. This was on how delivering micro-enterprise services can also be a choice for Shared Lives Carers.

Help @Home

The workshop highlighted some of Shared Lives Plus’ micro-enterprise members who have benefited from our support. Micro-enterprises deliver personalised services in their locality and collectively offer a marketplace that represents real choice and control for people who buy their services.

Delegates were particularly impressed by Dee who worked in the voluntary sector for more than 15 years with vulnerable adults and saw how they struggled with everyday activities, especially when they did not have any relatives or friends nearby.  Thus she saw a need, set up Help @ Home and now offers support Continue reading