13th October 2016

 This Challenging Behaviour - National Strategy Group (CB NSG) meeting was held jointly with the Learning Disability Professional Senate. The theme for the day was ‘Making Sense Together’ and featured presentations of lived experience, workshops delivered by professionals and family carers in partnership, a presentation from NHS England, and a session pulling together discussion from the day to decide concrete actions for the two groups to take forward.

The beginning of the day was an excellent demonstration of why services need to work together. Three presentations were given by family carers and people with learning disabilities, who shared with attendees their own personal experiences.        

• Jill Nasralla gave the opening presentation, which was a powerful account about how her son was the focus of a serious case review following his treatment in an Assessment and Treatment Unit.
• Next, Shahana Hussain introduced a video of her niece, Fauzia. In the video Fauzia described how she felt about living in an Assessment and Treatment Unit compared to the more appropriate setting she is living in now.
• A final account of lived experience was given by Michael Mulhall and Dave Williams described how they worked in partnership to support Michael to move out of an inappropriate service and into a house with a housemate of his choosing.

Following these presentations, attendees chose between the following five workshops:

• Call to Action: Medication and Prescribing. Ashok Roy (Royal College of Psychiatrists) and Holly Young (Challenging Behaviour Foundation) gave an overview of the issues surrounding overmedication, including data from a recent survey which asked family carers about their relative’s experiences of medication. Among other topics, there was much discussion about how multi-professional involvement from the initial assessment stage could help to address over-reliance on medication. Click here to view the outcomes of the workshop.

• Working in partnership with families to develop local pathways for children and young people. This workshop was presented by Jacqui Shurlock (Challenging Behaviour Foundation), Heather Armstrong (Clinical Psychologist) with information provided by Mary Busk (Family Carer). Attendees explored how families could be involved in services at all levels and how improved funding models could ensure that the necessary preventative steps are taken. Click here to view the outcomes of the workshop.

• Workforce development: Supporting providers to develop their staff. Steve James (Avenues) and Jan Seamer (Family Carer) co-presented the workshop, first outlining some of the challenges faced in workforce development before directing discussion to how improvements can be made. Topics discussed included the value of practice management and the need to create coordinated training structures. Click here to view the outcomes of the workshop.

• Good communication to improve the inpatient experience. This workshop was co-facilitated by Vicky Romilly (Nottinghamshire Healthcare NHS Foundation Trust) and Jackie Edwards (Family Carer). The group explored a number of topics including how to make sure family members are listened to when describing their relative’s communication and what can be done to really change professional practice. Click here to view the outcomes of the workshop. 

• Managing the risks:Supporting local learning disability specialist teams to get people into the least restrictive community environments. Tony Holland (Cambridge University) and Wendy Fiander (Family Carer) led this workshop to discuss which areas of local community support need to change in order to improve risk management and positive risk taking. Conversations included the need for joint working and increased clarity over where certain responsibilities lie and exactly what a service is expected to provide. Click here to view the outcomes of the workshop.

Graphic by Pen Mendonca

After lunch, Julie Higgins (Director of Transformation, NHS Engalnd) and the National Psychiatric Lead, Jean O’Hara, gave a presentation about the progress of the Transforming Care Programme. This was followed by a brief question and answer session before attendees participated in one of the five afternoon workshops. Click here for q and a responses provided by Julie Higgins.

Following this presentation, attendees again chose between five workshops:

• Working effectively with families to bring about strategic change. This was co-facilitated by Emily Williams (Gloucestershire Council), Dawn Rooke (Carers Gloucestershire) and Karen Roche-Galvin (PBS Practitioner). The group explored how barriers to listening to families as equal partners could be overcome. This included raising awareness of good practice and how to give families the opportunity to drive cultural change within services. Click here to view the outcomes of the workshop.

• Moving on:Minimising Risk and involving experts by experience. Julian Morris (Clinical Psychologist) and Emma Austin-Garrod (Family Carer) presented this workshop, where attendees discussed the difficulties which can be posed by transitions and how professionals can support this process. Conversations included the need for increased support during times of transition rather than reduced support and how to promote a wider understanding of co-production. Click here to view the outcomes of the workshop.

• National Audit Office: the Transforming Care Review – what evidence are we looking for? Presented by Ashley McDougall (National Audit Office) and Viv Cooper (Challenging Behaviour Foundation). Discussions during this workshop addressed the evidence required to assess progress, and issues such as how the NAO survey should be auditing professionals, the gaps in data between LA’s and CCG’s and how to find information on spending by CCG’s. Click here to view the outcomes of the workshop.

• Protecting Human Rights and upholding the Law. Alex Rook (Irwin Mitchel LLP), Charlotte Skouby (Leigh Day LLP) and Jackie Clarke (Family Carer) co-facilitated this workshop, beginning by presenting case studies to illustrate the issue of human rights violations for people with learning disabilities. The following discussion focussed on topics such as the role of Mental Health Act advocates and solicitors, as well as the use of inappropriate restraint and the value of giving more information to family carers to understand their rights and the rights of their relative. Outcomes of this workshop will be available soon.

• Making Sense Together:Hearing the voices of children, young people and adults with learning disabilities. This workshop was presented by Nick Gore (Tizard Centre), Della Money (LD Professional Senate) and Balwinder Sandhu (Family Carer). Attendees explored how pulling together many different pieces of existing communication guidance and making sure CQC inspectors use their own guidance for assessing communication could lead to improvements in hearing the voices of people with learning disabilities including children and adults with complex needs who do not communicate verbally. Click here to view the outcomes of the workshop.

In the final session of the day, Cally Ward (Challenging Behaviour Foundation) alongside Crispin Hebron and Sandy Bering (LD Professional Senate) led ‘What Next: Action Planning with the CB-NSG and the LD Professional Senate’. This was an opportunity to discuss the 2 priority actions identified in each workshop and draw them together to determine how they would be achieved. This was a busy session, but led to concrete commitments and a chance for attendees to reflect on how they could also make personal changes. Click here to view a write-up of the session.

Written updates were provided by the steering group on the progress made since the last CB-NSG National Meeting. Click here to view the update.