Srin Madipalli, co-founder of new travel accommodation website Accomable, explains how he plans to make exploring the world hassle-free for all, irrespective of physical ability......
Read more at http://positivenews.org.uk/2015/culture/positivetravel/18614/new-disability-travel-site-making-exploring-accessible-for-all/# (opens in a new window)
A DWP guidance document for providers carrying out assessments for Personal Independence Payment - download from the gov.uk website (link opens in a new window)
Using restraint on people with sensory issues in assessment and treatment units can have long-term detrimental effects on them, and it should be stopped, says Sam Sly
Recently in my work ‘life planning’ with people with learning disabilities in assessment and treatment units (ATUs) and those who have been discharged I've come across a number of situations where restraint is used to keep people in a ‘Catch 22’ situation and preventing discharge or its use while they were in an ATU has left a long-term impact on their ability to function back in their communities. I have major concerns about this.
The people I am referring to have sensory needs, which are met through deep muscle stimulation, firm touch or holds, which often gives them a sense of security and comfort. They are often, but not always, on the autistic spectrum or have personality disorders and we are letting them down.
Restraint is described as ‘a measure or condition that keeps someone or something under control’ and it is used a lot in ATUs alongside particular holds to prevent someone hurting themselves or others. It is arguable that restraint is one of the main forms of ‘treatment’ available in these places alongside the ‘chemical cosh’ of medication.
My first concern is that if ATUs were doing what they are supposed to do when a person is admitted – assess and treat – they would discover during an holistic assessment that a person had sensory needs and understand therefore that introducing a negative and extreme form of holding is asking for trouble further down the line, and cannot be replicated when they are discharged. My experience is that the priority of assessment rarely starts with sensory or communication needs; that goes to behavioural assessments and medication reviews, which don’t help understand the function of the person’s needs. Time and time again I've seen ATUs where people have been incarcerated for years and little or no assessment of their sensory or communication needs have been carried out.This means vital information is missed or not available.
Secondly, when ‘treatment’ begins, because of a lack of awareness of the person’s needs and of the limited ‘treatments’ available in a locked environment many of the things that could help a person when they are experiencing sensory distress cannot be used.
I met a woman who has been stuck in an ATU for many years being treated with the most extreme forms of medication and restraint that needs five people to perform; something not doable when she returns to her own home, and that she now relies on when she is feeling anxious and hurting herself. The ATU’s ability to support her in many of the ways we identified that may prevent her anxiety when we did life planning with her is restricted.
We identified that she used to love running for miles, riding her bike fast in the open countryside, so needed space, quiet, a low-stimulation environment and being outdoors most of the time. An ATU did not identify her sensory needs when she was admitted years before and neither did the multi-occupancy buildings she lived in afterwards, so her world slowly closed down to being one of isolation, segregation and restraint and her reputation for being un-manageable has grown. She is stuck and it was a lack of proper assessment and the wrong treatment that did this to her.
Another man I met is now in his own home but after tens of years of being ‘treated’ in an ATU with the most extreme forms of restraint, seclusion and segregation he struggles without this when at his most anxious. He has a team that he has picked and loves, but knows they cannot restrain him in these ways, so has sought other means to get this need met. He tries to get arrested, going to the extent of assaulting the police so that they will restrain him. His past ‘treatment’ introduced to him something so extreme that it’s not replicable in the real world, putting him at high risk of being re-admitted or sucked into the criminal justice system. Again, he has been badly let down through poor assessment and treatment that should have never been used.
But from an ATU perspective what else do they have in their toolkit? They have to manage often unsettled, unwell or anxious people living together, which means group safety and management is a priority. They often don’t have the staffing to be able to take one person out when they like where they like and these places are often locked facilities anyway. Lastly, they are still run on a medical model of treatment. Restraint is often not used as a form of ‘treatment’ but containment.
I believe that until good person-centred planning is facilitated for people they will continue to just be seen as their behaviours with their true spirit, personality and resilience not captured. Good person-centred planning, support and identification of sensory and communication needs can prevent admission and should be required of ATUs. Only then will people with sensory issues stop being given forms of ‘treatment’ that are the worst possible for them. It has to stop: indeed, there is an argument that restraint should be banned completely for these people.
About the author
Sam Sly is a freelance regulation, health and social care consultant. She was formerly co-owner and operational director of Beyond Limits. Sam is a registered social worker and has worked as an inspection, approved social worker, part of the Change Team following the investigation into Cornwall NHS Partnership Trust, commissioner, managed an NHS Campus closure in Bournemouth, helped local authorities transform adult and children's services and is a trainer and planner around personalisation and using individual budgets.www.enoughinenough.org.uk (link opens in a new window)
This article was first published in the September/October edition of Learning Disability Today magazine.
A series of crime prevention booklets – created by a man with learning disabilities – have been launched in Stratford-upon-Avon.
The booklets have been created Christopher Langman, who decided he wanted to do something to help other people with learning disabilities following a tour of Stratford-upon-Avon police station.
After reading some of the crime prevention booklets produced by the police, Langman wanted to help share the information with those who may find it hard to understand the advice, also including those who do not speak English as their first language.
Langman was assisted in producing the booklet by his support worker, Natalie Bull, who helped him translate the topics and lay them out in an easy-to-read format. Two of these booklets, focusing on hate crime and home security, have been published and will be made available to residents in the Warwickshire and West Mercia policing areas.
Inspector Julia Brealey, safer neighbourhood inspector for Stratford-upon-Avon, said: "We are always looking for new ways to help our local residents protect themselves and their property from harm. Sometimes people with learning disabilities can find themselves more vulnerable to certain types of crime and these books will be extremely beneficial in helping us to help them.
"We are extremely grateful to Christopher; his hard work will make such a difference to others in the community."
Langman described the experience of producing the booklets as "hard work but enjoyable and worth it." He added that he has learnt more about the important subjects he has written about.
Bull said: "Christopher has been extremely enthusiastic in producing these materials that he hopes will benefit others. He has also enhanced his word processing, presentation and internet search results with some of his own photography."
View the booklet on hate crime (pdf file, opens in a new window)
View the booklet on home security (pdf file, opens in a new window)
Today we launch our consultation for the new role of a National Guardian. This will be the first NHS National Guardian and they will be responsible for leading local ambassadors across the country so that staff feel safe to raise concerns and confident that they will be heard.
We will work closely with other bodies including Monitor, the NHS Trust Development Authority and NHS England to support this role.
We want to hear your thoughts on the best way to establish and ensure the independence of this role and how the responsibility will lie within our organisation.
The need for an independent National Guardian for the NHS was highlighted in Sir Robert Francis' ‘Freedom to Speak Up’ review in February, which found that patients could be put at risk of harm because vital information about mistakes and concerns were not being raised by NHS staff routinely – the review found that reporting systems were either insufficient or not used or because healthcare professionals did not feel able to.
The creation of the National Guardian was one of the key recommendations from this review. The Secretary of State for Health confirmed in July that we should host the role.
This role is incredibly important to our work and the sector's work, and we welcome all your feedback. You can read more about this role and provide us with your comments here.
Care Quality Commission
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Care for the Elderly
Care and Support Statutory Guidance Issued under the Care Act 2014 - download from the Department of Health GOV.UK website - link opens in a new window.
Advice for Carers - A practical guide from AgeUK - pdf download (link opens in a new window)
Les has a son with a learning disability and has been involved in developing support mechanisms since 2000 when his family and three others first received Direct Payments. At that time the local authority offered no support, so the four families decided to design their own support system. Since then Les has been involved in assisting others to form their own groups in the UK, where he has worked on Direct Payments and Peer Support. He has also spent 4 weeks per annum for the last 8 years in Australia, where he assisted in setting up the first Direct Payments system. Following this Les has worked with families in Australia assisting and advising those in need of support services. Les served on the National Task Force, he has also served on the National Valuing Families Forum, and is a graduate of Partners in Policymaking. Les has given presentations on Direct Payments and Peer Support nationally and in Australia.