NICON – Collaboration in ‘Complex Challenges’

We are all about collaboration.  So we support the learning disability community working together to talk about problems.  And come up with solutions and ways to work better together.

We were delighted to co-present a workshop at the NICON Conference whose theme this year was Grasping the Nettle.  And driving change forward across health and social care.  We co-delivered the workshop with the Department of Health and Belfast Trust.  The workshop was chaired by Petra Corr from the Northern Trust.

We wanted to show examples where people have worked together (collaboration).  To think about something that is difficult (complex).  And find solutions to make the lives of people with a learning disability better.

So we asked the community for case studies and there were lots that we could show.  But we wanted to encourage a conversation in the workshop.  So we landed on three examples.

Collaboration in Overcoming Complex Challenges

Case Study 1 – The Complex Challenge of a fulfilled and meaningful life

In the 1990’s Positive Futures met with a provider in England to learn about a new model of support offering short breaks and respite, and enabling people with a learning disability to live a normal and fulfilled life.  And they brought this model to Northern Ireland by presenting a business case to the Belfast Trust.

Families Matter Shared Lives Service offers adults who have a severe learning disability and/or autism, and live within the Belfast Trust area the opportunity to live with another family/individual, go for short breaks or have day support.  This model is embedded within communities, local networks and local families. And is delivered collaboratively between a charity, a trust, and everyday extraordinary people.

Shared Lives Carers

Shared Lives Carers are ordinary, yet extra–ordinary, people who have time in their lives and, where required, space in their homes to offer someone support.  The most important aspect of Shared Lives is sharing a love for something, knitting, horses etc – compatibility and person-centred.  Families Matter Shared Lives Service currently supports 14 long term placements and 14 short break/day support placements.  And this is an extremely scalable, cost effective, and bespoke model of support.

Learning

So what have we learnt about the impact of this collaboration in supporting people to have a normal and fulfilled life:

• Lets get back to basics – People with a learning disability (regardless of mild, moderate or severe) and/or those with autism, are human beings who have needs and preferences just like us; hence using a person centred approach is key
• Multi-disciplinary teams are employed by the charitable sector and their knowledge and expertise can and should be trusted
• With appropriate support the general population (citizens) can offer person-centred care and support to individuals who have a variety of differing needs
• And we should urgently consider that if appropriate support was lent to parents of children with a learning disability and/or autism at the earliest possible stage, families may not hit crisis and people with a learning disability and/or autism can live a full and meaningful life in their local community.

Case Study 2 –  The complex challenge of managing behaviour positively

The Mews Supported Living Service is specifically designed for adults with a learning disability.  And many who have resettled from Muckamore Abbey Hospital. So the Cedar Foundation and the Belfast Trust worked together to develop a shared plan to support people with their behaviour.

The “Positive Behaviour Support Clinical Discussions” (PBS Clinical Discussions) Framework looks at how to improve the quality of life and delivering positive outcomes for people supported.  And its grounded in the principles of Positive Behaviour Support (PBS).  A key objective is to prevent hospital readmissions and reduce the need for secondary interventions.

Learning

So what have we learnt about the impact of this collaboration in supporting people with complex behaviour:

• Social care workforce are highly skilled at supporting individuals with complex behaviour.  And work is underway by the DoH’s Social Care Fair Work Forum to address this in partnership with the sector
• Providers benefit from excellent collaboration and communication with both clinical and AHP leads within Trusts.  And because of this the evidence from a cross-sector multi-disciplinary workforce review is being addressed within the DoH’s revised LD model
• Trauma informed practice embedded within Positive Behaviour Support can benefit individuals managing their behaviour
• And with person-centred care we can achieve the completion of the resettlement agenda.  And offer people the right to live in the community as individuals

Case Study 3 – The complex challenge of multiple health needs

Meet William, a person supported by Kilcreggan. William is a larger than life , naturally hilarious man , with a proper Belfast sense of humour.  He is charming and people find him helpful and caring.  William has a number of health needs including:

• periods of poor mental health
• sleep apnoea and is required to use a NIPPY machine (but he cannot tolerate it)
• Type 2 diabetes
• A prominent hiatus hernia; and
• Is clinically obese

William also has a learning disability.

Support staff in Kilcreggan saw the impact of these health conditions on William’s self-esteem and confidence.  And came up with a creative plan to support William to take control. These included staff:

• Collaborating with the Belfast Trust about the creative use of enhanced support hours
• Working with William to identify his preferred plan.  And this included no bulk cooking and daily walking to shops for ingredients
• Helping families and friends to have a better understanding of William’s health needs.  Also his holiday goal, to encourage good food choices
• Who had lived experience of Diabetes and were trusted by William, lending peer support.  So William can understand diabetes more. And they encouraged William’s participation in research
• Supporting other people to understand William’s need and his wishes. For example the Diabetes nurse discharging William as a result of misunderstanding his jokey demeanour to cover up embarrassment as a lack of commitment to the process.
• Supporting William’s right to make choices.  But creatively supporting good decisions.  Such as sourcing fakeaway recipes in take away cartons

Learning

So what have we learnt about the impact of this collaboration in supporting people with complex health needs:

• The sector goes above and beyond to implement creative and innovative solutions to meet individual need
• We need to develop a shared approach to risk across the health and social care sector.  And this will help us collaboratively uphold the rights and choices of people.

Key Messages from the Floor

Communication is key to collaboration.  And collaboration works best when relationships are built on trust and respect. But most importantly to overcome complexities we should listen to the people at the heart of it.  That is the person with a learning disability, autism and other support needs.