CB-NSG Response to Panorama

Following the publication of the CQC's review of learning disability services and the Department of Health interim report, Mencap and The Challenging Behaviour Foundation released a joint statement:

Mencap and the Challenging Behaviour Foundation are calling on the Government to take strong action to end systemic poor care and abuse at large, institutional style services for people with a learning disability.

The learning disability charities are concerned following the publication today of two official reports into services for people with a learning disability. The reports from the Care Quality Commission and the Department of Health highlight continued failings to protect people in care from abuse. Both reports acknowledge that services must improve.

The charities are calling for the phased closure of large, institutional-style services for people with a learning disability, and their replacement by appropriate local services.

In a joint statement, Mencap chief executive Mark Goldring, and Challenging Behaviour Foundation chief executive Viv Cooper, say: “One year on from Panorama’s undercover investigation into a private hospital for people with a learning disability, people continue to remain in large, out of town units for long periods of time, isolated and at risk of abuse and neglect.

“Action is needed to stop people with a learning disability and behaviour that challenges being sent away to these services.

“The government’s proposals on local action will not be enough to create the systemic change needed. We are looking for a direct commitment from government to put in place a strong, practical action plan with clear targets when it publishes its final review in September.”

Mencap and the Challenging Behaviour Foundation are calling for local areas to develop skilled long term support for people with a learning disability and behaviour that challenges. Crisis situations for families can be avoided by a focus on prevention, early intervention and developing a skilled workforce. The charities believe that people should be able to access the support and services they need in their local area and live fulfilling lives within the community.

Today, the Care Quality Commission (CQC) published its report of 145 inspections of services for people with a learning disability, which found that nearly half the hospitals and care homes inspected did not meet essential standards of care and protecting people from abuse.

The Department of Health also today published its interim report on Winterbourne View. The final Department of Health review is expected in September 2012.

To view the press release in full click here.

Winterbourne campaign

The Challenging Behaviour - National Strategy Group and the CBF are campaigning with Mencap to make sure we never again witness the sort of abuse that happened at Winterbourne View and have released the following e-action:

"Please email your MP today to ask them to call on health secretary Andrew Lansley to put a robust action plan in place, to ensure that people with a learning disability are protected from abuse and supported in their communities, near their families and support networks.

"Following on from the BBC’s Panorama programme last year, which exposed abuse at Winterbourne View, a privately run hospital for people with a learning disability, the government says that services must improve. But promises to ‘do better’ are not enough. We have little confidence that the actions set out in their interim report will lead to the change that’s needed. It can’t just be left to local action: we need strong leadership from the top to make change happen.

"We want to see the phased closure of large institutional-style services for people with a learning disability, and their replacement with local services, so no-one is sent far from home – isolated and at risk.

"We need your help to make sure that the government’s final report, due in the autumn, includes clear targets and a robust programme of action to make change happen."

Click here to take action and Email your MP.

Click here to see the background policy paper.

Out of Sight: Stopping the neglect and abuse of people with a learning disability

It has been over a year since the BBC Panorama documentary, “Undercover Care: The abuse exposed” showed systematic and pervasive abuse of individuals with learning disabilities at Winterbourne View, a privately run assessment and treatment unit in South Gloucestershire. The resulting investigation prompted the closure of the unit, the prosecution of 11 members of staff, and the launch of a series of reviews, reports, and unannounced inspection visits to similar units across the UK.

With the remaining Winterbourne staff member entering a plea of guilty to charges of ill-treating a patient under the Mental Health Act at Bristol Crown court earlier this week, and a date set for sentencing on the 22nd of October, The South Gloucestershire’s Safeguarding Adults Board (SAB) has published a Serious Case Review of events at the unit. This has been accompanied by the NHS South England review of the commissioning of care and treatment at Winterbourne View. The reports show that the abuse at Winterbourne View resulted from serious and sustained failings in management procedures, as well as short- comings in procedures and systems for commissioning patient care, and in reviewing and safeguarding the wellbeing of patients before and during their stay at Winterbourne View.

Since the Panorama programme, the CBF and the Challenging Behaviour National Strategy Group have been working to ensure that the issues raised by the investigation result in real and lasting changes in the care and support of people with learning disabilities.

Our new report, Out of Sight, produced in collaboration with Mencap, warns of the risk of “another Winterbourne View”, unless the Government takes strong action to stop people with a learning disability being sent to large institutions, often hundreds of miles from home where people are at particular risk of neglect and abuse.

The report focuses on the experiences of James, Chrissy, Joe, Emmanuel and Victoria, and the terrible neglect and abuse they have experienced in institutions like Winterbourne View. Through the stories of these individuals and their families, we are calling on the Government to demonstrate strong leadership and urgently address systemic failings in the care of people with a learning disability, by the phased closure of all large assessment and treatment units and the development of appropriate local services.

You can read more about our response to the events at Winterbourne View on our National Strategy Group page and download the CBF and Mencap joint press release about the report here

The full report is available here together with an easy read version.

Take Action

We encourage everyone to help us draw attention to the serious issues highlighted by the events at Winterbourne View by contacting your MP.Together we can help make a real difference to the lives of people with learning disabilities and ensure that all measures are taken to enable people like James, Chrissy, Joe, Emmanuel and Victoria get the right support, at the right time, and in the right place.

email the Out of sight report to your MP
ask your MP to press the government for a strong action plan
ask your MP to attend a debate on 'abuse of people with a learning disability' (Secured by the Rt. Hon. Tom Clarke MP) on 3rd September in Parliament.

Click here to join the e-action.

Time for action

The Challenging Behaviour - National Strategy Group (CB-NSG) released a statement calling for a number of specific actions to be taken in response to the Panorama investigation. This information has been sent to the Department of Health as part of a ministerial briefing for the National Learning Disability Programme Board and other key individuals and organisations.

An Easy Read version is also available.

You can also view the accompanying letter and the response from Paul Burstow, Minister of State for Care Services.

How can you help?

You can help by:

Emailing your MP today and asking them to call on the Secretary of State for Health, Andrew Lansley MP, to set out plans to ensure people with a learning disability are protected from abuse and supported in their communities, near their families and support networks.
Writing to your MP and ask them to support these actions to prevent the abuse of adults with learning disabilities and improve their quality of life. Find details of your MP.
Signing up to the CB-NSG charter to promote the rights of individuals with learning disabilities who are labelled as challenging.
Contacting your local learning disability partnership board and ask them what action they are taking.
Asking your Learning Disability Lead Commissioner in your Primary Care Trust to provide information from the Health Self-Assessment Framework about local services and support for individuals with learning disabilities whose behaviour challenges and out of area placements.
Helping us to make a film, Everybody Matters, to influence change.

Updates

Below is a full list of the actions with a section on what’s happening in response to each which we will update as the reviews progress and recommendations are made

Action	What’s happening
Commissioning
Implement the recommendations in Mansell 2, Department of Health guidance (2007), particularly recommendation 15. “Councils should strengthen their commissioning to combine expertise about challenging behaviour with the ability to actually develop the services needed. This is required at both strategic and operational levels. At a strategic level, councils should: Garner resources: work with other relevant agencies to identify all current expenditure on learning disabilities, including resources accessed in emergency or crisis, and obtain agreements to pool these resources to work together to improve outcomes for people whose behaviour presents a challenge Audit provision: find out which services are good at supporting people whose behaviour presents a challenge and which are not, and why. Assess need: find out how many people have behaviour which presents a challenge, including Young people approaching transition from school People placed in the area funded by other authorities People living at home not receiving services People placed out of area Develop partnerships: work with provider organisations who are committed to developing good services to support people whose behaviour presents a challenge to agree commissioning and funding arrangements that will achieve value for money while sustaining investment and development in local services Plan services: forecast the amount of new housing, day opportunities and support that will be required in the years ahead; map the staffing and staff training implications of this; and plan how this will be financed”
Develop a national template of service specifications regarding what makes a good local service for people with behaviour described as challenging. Commissioning should then be informed by this template, and regulators can utilise it to inspect against.
Pilot programme in which joint health and social care teams are funded to develop local services that would allow them to break their dependence on private &/ or independent hospitals and other out of area services and support which provide poor outcomes. Pilot programme to inform future joint commissioning to develop local services.
Pilot programme of family directed support in which family carers who have a relative who lacks capacity to manage an individual budget are empowered to stimulate the development of local, individualised support.
Health commissioners to ensure there is a localised specialist multi-disciplinary outreach team that can support people in their own home. Support should be available twenty four hours a day, seven days a week.
Every local authority to develop a clear pathway to access local expertise, with a time limited assessment process and a treatment plan. Within this pathway, if a specialist provision is required, a discharge plan is agreed for appropriate local provision on entry.
Department of Health, through the NHS Commissioning board or any new arrangements as they emerge, to monitor commissioning practice in this area judging success on the extent to which service specifications are based on the national template, low number of placement breakdowns and out of area placements.
The NHS Information Centre should reintroduce into the annual RAP collection from Councils with Social Services Responsibilities data on out of area placements of people with learning disabilities. This was dropped a few years ago, and the Care Quality Commission did collect some information on this through their CRILL data, but also stopped this. As a result, there is no way of knowing how many people with learning disabilities are supported out of area, how this varies by Local Authority and whether it is changing.
The regional Health Self-Assessment Framework (which is in place in England) monitors outcomes including whether a range of local services is available to individuals who challenge services. Utilise this information to ensure progress is being made year on year in the right direction. This is a transparent way in which local people, commissioners and regulators can ensure that progress is being made.
Leadership, Professional Support & Training
Develop a delivery plan to ensure widespread implementation of best practice guidance “Challenging behaviour: a unified approach. Clinical and service guidelines for supporting people with learning disabilities who are at risk of receiving abusive or restrictive practices” Royal College of Psychiatrists, British Psychological Society & Royal College of Speech & Language Therapists (2007).
Make a recognised Positive Behaviour Support qualification for managers a requirement for registration as part of a whole organisation approach to training.
Ensure mandatory training supported by qualifications for all care staff about value bases when working with people with learning disabilities, positive behaviour support, types of communication, active support and engaging in meaningful activities, Mental Capacity Act and Deprivation of Liberty Safeguards.
“Open” services & independent advocacy
Every individual with a learning disability who is in an assessment and treatment unit or out of area provision must have the support of a high quality independent advocate/independent visitor.
Advocacy could be provided along the lines of the Independent Visitor model used in children’s services and be managed and funded by the Care Quality Commission or via Healthwatch.
The regulator should monitor “external” visitors to a service, e.g. support to encourage and maintain contact with families, advocates, befriending schemes, registration with a local GP etc.
4. Regulation and monitoring
Develop specifically trained inspectors for Learning Disability services, including those who have an expertise in challenging behaviour to ensure that they know what evidence based good practice looks like, the range of community based support available and what they should look for e.g. use of functional assessment and behaviour support plans, frequency of physical restraint, seclusion & PRN medication, injuries to people with learning disabilities and staff, concerns and complaints around behaviour management etc.
The Care Quality Commission (CQC) should build on previous work (Healthcare Commission/Commission for Social Care Inspection/Mental Health Act Commission) on commissioning for complex needs, and utilise the expertise of family carers of people with complex needs and people with learning disabilities as members of inspection teams.
Inspections of learning disability and autism services should involve, except where inspectors are certain that people can communicate well and speak freely about their situation, a minimum period of observation focused on the quality of support and interactions between staff and the people they support. Observations should be done using an appropriate and established observational tool. CQC already have the Short Observational Framework for Inspections (SOFI), which we believe was being revised to be more applicable to learning disability services. Inspectors need to have sufficient training, not only in completing the tool, but also in how to observe and what they should look for in order to judge the quality of the support provided and in particular whether it is person-centred and in line with good practice. Training is essential to ensure consistency and reliability in inspectors’ ratings”.
CQC inspections must include gaining direct information from the service user and/ advocate and also their family carers and inspectors must have appropriate skills in this area.
CQC should stop registering the wrong model of service and set a limit on the number of people a service can provide for (as in Wales).
CQC should publish clear guidance on what type of service can be registered (e.g. NOT large, long-stay “autism hospitals” or services with limited access e.g. locked wards with no access to family carers) although, very rarely highly specialist inpatient units might be required in the short term in order to assess acute mental health problems. This should not be seen as long term provision.
CQC should ensure services are monitored around outcomes delivered for individuals.
CQC to provide a search facility to enable family carers, advocates etc. to search online for all the inspection reports of each provider & a separate assessment of the provider as a whole.
Accountability & quality assurance of provider organisations
The main boards of companies providing health and social care to vulnerable people must have independent non-executive members and be subject to CQC inspection and accreditation. The main board would need to meet “fit person” standards that have been agreed through consultation with users, families and professionals.
Transparency in respect of margins, levels of borrowing and the identity of members of the main board. This information is actually available in the public domain but so complicated to find that very few people do. There could also be limits on these in the same way as Community Interest Companies have additional responsibilities.
Services are required to provide evidence of reduction of restrictive practices (e.g. physical restraint, seclusion etc.) as part of the inspection process.
Human Rights
Speed up the placing of Adult Safeguarding on a statutory footing, with requirements for local authorities, the NHS and provider organisations to demonstrate their compliance with quality assurance standards.
Ensure that those commissioning services require service providers to demonstrate their compliance with the provisions of the Mental Capacity Act 2005.