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Changing poor practice

Read about CBF's projects and research, both past and present, relating to changing poor practice.

Current projects

NHSE Trauma Collaborative

The CBF was a partner in a project with Respond, the Tizard Centre, and Three Cs funded by NHSE to look at the need for trauma support for the family carers of children and adults with learning disabilities and/or autism. In the first strand of the project, the CBF gathered the views of family carers and worked with Respond to provide advocacy support to some families in the second strand of work. The third strand of work was conducted by the Tizard Centre to gather the views of professionals. Together these three strands of work have been written up into a final report currently waiting for NHSE Sign-off.   

The report of the findings from the CBF survey is called ‘Broken’: The psychological trauma suffered by family carers of children and adults with autism and/ or a learning disability and the support required. The CBF report contains three key recommendations for education, health and social care, and other professional learning disability bodies: do not traumatize families in the first place; when trauma happens there needs to be a pathway in place; and act now to help the families who have already been traumatised and will have an immediate need due to the pandemic.  

Read the ‘Broken’ report

Read our information and guidance on ‘When things go wrong’

Read our information and guidance on ‘Early intervention’ 

‘New Normal’ survey

The CBF are currently exploring how individuals with learning disabilities, their families, support staff, and those working in the learning disability sector have experienced the challenges, benefits, and new methods of working which have arisen in response to the pandemic and lockdown. Between 9th September and the 1st October 2020, the CBF gathered information from a range of stakeholders about their experiences of the pandemic through a survey.

The findings of the survey were considered alongside concurrent work undertaken by researchers from SF-DDARIN, who conducted a series of interviews using ‘word-map’ interview methods with family carers to discuss how they have been impacted by the pandemic.  Together, findings were discussed at the  Challenging Behaviour National Strategy Group meeting in October 2020, where specific actions were discussed to address some of the key issues raised. 

Read the four reports from the ‘New Normal’ project

Read our information and guidance on ‘Health’

Read our information and guidance on ‘When things go wrong’

Restraint, seclusion and medication

The CBF is committed to reducing restrictive interventions.  Reducing the use of restrictive practices has been a core focus for several CBF projects that have focused on the issues of medication and restraint.

For more information see our page on ‘Restraint, seclusion and medication’

Restraint and seclusion

The CBF has been working to bring to light families’ shocking experiences of restrictive interventions, including within schools. Working with families, we’re bringing key organisations together to develop a strategy which will tackle this issue across the UK. Our aim is to reduce restrictive interventions and safeguard children. 

Medication

The STOMP (Stopping Over-Medication of People with a Learning Disability, Autism or Both) and STAMP (Supporting Treatment and Appropriate Medication in Paediatrics) programmes are initiatives within NHSE to try to address the issues around inappropriate medication of people with learning disabilities and/or autism.  

The CBF has been raising the issue of over-mediation and inappropriate medication use for many years, with a succession of Government Ministers. Our projects have included:  

  • A Family Carer Medication Consultation, reporting on family perspectives on the use of medication. 
  • Developing an online Medication Pathwaya resource for families of people with learning disabilities, autism or both who are prescribed or may be prescribed psychotropic medication.
  • Collaboration with MindEd to produce 6 online STOMP modules, developed in partnership with family carers recruited by the CBF. The first of the six sessions is planned to go live in April 2021.
  • Collaborating with family carers to create and distribute STOMP information packs to CB-NSG core members to share with family carers and professionals in their network. 

Find out more about our work on ‘Medication’

Read our information and guidance on ‘Health’

Read our information and guidance on ‘When things go wrong’

Read the online resource: ‘Medication Pathway’

Current research

‘New Normal Interviews’

SF-DDARIN

This research project, consisting of a number of interviews with family carers, aims to investigate family carers’ experiences of the pandemic. Interviews conducted in ‘word-map’ formats via video call ask for information about what has changed for them during the pandemic and lockdown to find out what practices or means of support have been particularly effective (or ineffective). The research is a collaboration between the CBF and SF-DDARIN, including researchers from the University of Warwick and Tizard Centre, University of Kent. 

Trauma AID research 

University of Swansea, University of Birmingham 

This piece of research aims to investigate the effectiveness of treating post-traumatic stress disorder (PTSD) for individuals with learning disabilities by using ‘Eye movement desensitisation and reprogramming’ (EMDR). EMDR treatments have been effective at treating PTSD in general populations, and this research will see whether they are similarly effective (and cost-effective) for individuals with learning disabilities. The study is the first of its kind, and to find out more click here. 

Past research 

SPECTROM 

Short-term Psycho-Education for Carers to Reduce Over Medication of people with intellectual disability (SPECTROM) is an NHS funded research project related to STOMP. The CBF has collaborated with other organisations and professionals to produce a psychoeducational programme for Care Staff. As well as training modules on understanding behaviours and alternatives to medication, the SPECTROM programme has produced a website full of resources and other accessible materials  that we hope are of use to the wider audience. 

 

 

Medication

Medication

The STOMP and STAMP programmes are initiatives within NHSE to try to address the issues around inappropriate medication of people with learning disabilities and/or autism.  

When things go wrong

When things go wrong

The information in this section will help you understand what is meant by poor support and abuse, and who to talk to if you suspect your relative is coming to harm or not being cared for properly.