Community engagement: services for people living with learning disability and autism

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Summary of report content

This is a report by Healthwatch Havering. The project looks at the experiences of people with learning disabilities and autism.

Healthwatch Havering worked with local groups to speak to service users. They also used a survey to gather feedback.

In general respondents were negative about the services experiences they had.

There are recommendations in this report.

That consideration be given to means by which people cared for by parents (or other relatives) can be prepared for the changes that will be inevitable when those who care for them are no longer able to do so.
That consideration be given to setting up some form of agency able to place people with learning disabilities and/or autism in suitable employment.
That, whilst accepting that this issue is outside the remit of this report, the extent to which it might be possible to relax the legal framework to facilitate access to service users’ money without compromising the essential safeguards be explored.
That the availability of clubs and safe and secure arrangements for getting to them for those that need such help be more widely advertised through Adult Social Care.
That the scope for reinstating “drop in café” facilities be explored.
That all staff working in health and social care environments who are likely to encounter service users living with learning disability or autism be required to undertake awareness training (and regular updating)
That all GPs and practices be reminded of their obligation to offer people with learning disability or autism an annual health check on a face-to-face basis with the intention of making a positive contribution to service users’ health and wellbeing.
That GP practices – or PCNs on their behalf - arrange for the availability of wheelchairs or hoist scales for those service users who are unable to stand when undergoing their annual health checks.
That consideration be given by GPs to providing a dedicated phone contact line for use by people who are living with learning disability or autism and those who care for them in order to facilitate good communication.
That, recognising the difficulty they may experience in rapidly absorbing information, all service users living with learning disability and autism, and their carers, be given written information about their treatment after an appointment.
That consideration be given to setting up a register of dental practices that are “learning disability and autism friendly.”
That consideration be given on a cross-agency basis for the appointment of a dedicated caseworker as a single point of access for service users and their carers.
That improved arrangements be made at Queen’s Hospital to ensure that when patients living with learning disability and autism arrive, whether for planned care or A&E services, they are greeted appropriately and, where necessary, accorded the essential priority necessary to avoid causing avoidable distress or triggering challenging behaviour.
That all health and social care organisations’ websites be reviewed and adjusted as necessary to ensure that information is available to service users living with learning disability or autism in terms and formats they can easily understand, with alternative means of communication available for their use.
That sensory training be made available to all schools, parents and professionals.
That awareness training be made available for school pupils on learning disabilities, autism, ADHD, and mental health so the children understand these conditions and grow up supporting them and dealing with those affected with care and compassion.
That the avoidable barriers to people living with a learning disability or autism being able to enjoy freedom of movement or taking up suitable employment be addressed and, where possible, eradicated.
That opportunities for carers to become more closely involved in service development be identified and their participation encouraged accordingly.
That the Council and NHS North East London (who have the responsibility of commissioning all the health and community services) acknowledge that the description of Havering as “one of the worst boroughs in London for their lack of care or empathy, assessment, assistance or anything to say the least” is a wake-up call for the health and social care sector as a whole and take positive action to secure the improvements needed to meet the criticisms in this report.