Three years ago, the Co-production Board met for the first time excited and enthusiastic but not actually sure what co-production was or in fact what the boards purpose was. This understanding took about a year to truly reach a place where purpose and understanding was aligned. Co-production improves the way health and social care services are designed and delivered by putting an emphasis on a more equal partnership between professionals and people using services. Working together as equals builds better relationships (based on trust, respect and understanding) and helps to create services that actually work for the people using them.

• Co-production Week 2021
• Oxfordshire County Council

It is a huge ask to change people’s way of working, for the workforce of adult social care to be on the same level as the people they are helping: and there is one of the problems, the word helping! It immediately creates a power imbalance. What exactly is their job? People who need to use adult social care are some of the most vulnerable in society, social workers are not helping them as such but facilitating their ability to live fulfilled lives within society. It is the power imbalance being constantly challenged, working together as equals that really drives us towards the shift we need. Simply, Co-production is the person who needs the service being involved in all aspects of designing care whether this on a personal basis or at the core of the council through true engagement via commissioning.

Three years on: Are they?

Like all long-term projects, co-production has had its ups and downs not helped by the pandemic and many lockdowns resulting in Oxfordshire Adult Social Care being, like all other local authorities, stretched to its limits. But it’s not all doom and gloom in fact we have made some significant progress Improving co-production practice within the council and across Oxfordshire, Involving more people across Oxfordshire who use services in co-production projects, involvement of people who use services in significant Council meetings for the first time eg Performance Scrutiny and involvement of people who use services in the recruitment to senior positions within the Council. This we are really proud of.

“The local authority is a servant, not a master, a truth which on occasions is too easily overlooked. Vulnerable adults and their carers look to the state – to a local authority – for the support, the assistance and the provision of the services to which the law, giving effect to the underlying principles of the Welfare State, entitles them. They do not seek to be “controlled” by the state or by the local authority. And it is not the state in the guise of the local authority to exercise such control. The state, the local authority, is the servant of those in need or its support and assistance; it is not their master. And any attempt to control is likely to be counterproductive when it comes to a local authority “working together as it must with family carers”. Lord Justice Mumby.

Whilst this is absolutely the direction of travel we need to keep moving in at pace, without doubt, we need to constantly hold a lens up to ourselves by checking challenging and evaluating co-production to ensure that we are able to do more co-design and co-evaluation of services which is essential for continuing to scale up co-production in Oxfordshire.

Senior leaders genuine and real support of co-production practice is what will allow us to plan, design and truly deliver together moving forward. This kind of support is essential to ensuring projects/ pieces of work can actually be co-produced, Without this genuine support and commitment, people end up having to make concessions that compromise the co-production and end up making people involved feel it has been a tokenistic/ pointless exercise. Commitment and ambition will enable us to continue the great work we are doing in Oxfordshire.

Through ‘Our Voice’ and other activities people who have Down’s syndrome are involved in the planning and delivery of services, decision making at all levels of the organisation and evaluating our activities. We think the best ways for people to participate is by creating things, and making decisions together; through co-production.

• ‘Our Voice’ from the Down’s Syndrome Association
• Down’s Syndrome Association and co-production
• Sam talking about one year of the One Voice project

The Our Voice team meet weekly on Zoom to talk about important topics and work on projects together. Due to the coronavirus pandemic we started hosting weekly update webinars to inform people of important change and work that was happening to protect the rights of people who have Down’s syndrome. 28 were held in all. The Our Voice team have regularly presented at these events and shared their stories or discussed updates from the group.

Emotional wellbeing

The ‘Our Voice’ team helped in the development of lots of resources including the hugely popular Emotional Wellbeing resources with the aim to help parents, supporters and people who have Down’s syndrome to support emotional wellbeing. Emotional wellbeing is about how we think and feel and how we cope with life events. It is also about how we deal with our own emotions as well as those of others.

We hope the resources will help people who have Down’s syndrome to feel good about themselves and give them ways of coping when life is challenging.

• Down’s Syndrome Association: Emotional wellbeing, depression and bereavement
• One Voice video: Meet the team

During my autism education career, short lived due to health issues, I performed as many do from all sides of life, as a professional. This is where I say I mask but do not limit to autistic females as I believe many in politics, leading names, even national names do, day in and day out. When I worked professionally in local authorities or professional key conferences in education, the power and topics for agenda was held by the one holding the purse strings. Often the designated event organiser was given instructions from the top in a no doubt methodical and fit-for-purpose way. I had no autistic diagnosis and therefore not believed to be autistic, so spoke on autism in a professional capacity, and my topic freedom was non-existent. The actual accepted autistic voice was often added into events, either as an entertainer or trauma mental health story. Autistic researchers and professionals, apart from maybe one name I can think of, just didn’t exist in the open.

• Co-production Week 2021

After medically retiring, I still wanted to talk about important autistic health issues that have been either neglected, disbelieved or just not known about, yet affects so many of us. This has been my passion over the years and finally I can see some focus of light filtering through the opaque prism of barriers. Once I lost my status and title that comes with a good job, plus health, finance and nearly my life, I found it much harder even with my recent autistic diagnosis to be accepted. I started talking during the beginning of lockdown by webinar and while I could design my talks, the power I had in designing the show casing of it varied widely from really empowering and delightful hosts to those who had no interest in their speakers, subjects or probably much else. Sometimes I never had any feedback afterwards and there can be a huge let down effect.

This Covid era year, the inaugural interdisciplinary autistic research festival/conference was held May 21 over 3 days (IARFestival21). I found out about the IARFestival by accident. I do not have an integrated group of researchers, educationalists or funders to be part of the ingroup therefore felt it highly likely I would not be accepted or for my key topic of symptomatic hypermobility.. I am indebted therefore to Anna Stenning and the other co-hosts, who were open to having unknown people to them on board. I am literal, so when it says research in the title, I was not involved in research at that time, I tend to not apply. The aims of the IARF were perhaps put together as an alternative to the top down heavy research led or International led conferences which we had all been dependent on. This is why I have not asked to talk at other autistic research conferences until recently. It is brave to bring on people who you might not agree with their topic or take a risk with someone outside your circle but include respect and value all perspectives and hopefully see that everyone is of equal importance. I have initiated autistic co-production groups before (SCIE ref blog 2020) and I know on a smaller scale how challenging it can be but the reciprocity for everyone is key and believe that leads to authentic empowerment.

So I was booked and had a very short time to cover what is an absolutely immense topic on symptomatic hypermobility (Ehlers-Danlos syndromes, EDS,JHS) and autism health, social care and employment; in education to help attainment and attendance particularly for missing girls at secondary level. For health generally in the autistic/neurodivergent population and how EDS affects us in employment as we can lose our careers. I don’t get funding for this as it is all voluntary, but I know the significance of it and I recently created and led the first UK school toolkit for EDS and JHS with national charities.. For many years autism and actual physical health issues have been a bit traumatic for us due to past now discredited research. But the trauma of this is still around so it has been a huge mountain to climb.

So back to the festival. I have history of being different and standing out and I am comfortable with doing that now but I do acknowledge it is less isolating to be accepted and almost finally as an autistic person from my established community. I don’t believe in segregation and yet so many seem set on this ideal for safety. I I believe it mitigates progress.

From my perspective as an outsider I did not share the power in the concept or design but as there were over 30 talkers that was accepted; the audience was over 600 plus 15,000 on social media and now most of the talks free to view. The organising of our disparate groups came together well and I found the premeetings, once I navigated in, welcoming and that I would be accepted to talk. My computer overheats as it steadily declines into hardware death, so I knew I could only do 2 takes and that was it. I haven’t had time sadly to view it all live but each and every talk was allowed to go on their youtube site and also have publicity when highlighted. I believe that this was novel as in at this enormous level , this had never been undertaken before. I felt the joy emanating from those taking part and from those watching it. I have had huge feedback personally, some heart-breaking and an increasing amount asking for advice and signposting from girls, women in particular and as older women this is an incredibly nerve wracking time, to question your identity after so many years. I am honoured to be a part of their journey.

So the IARF was brave for accepting people or subjects they had never heard of or had not been accepted as significant before. It was not full authentic co-production that I have been involved in but happily can say it was on the way and many thanks to Anna ably supported by Damian Milton and Georgia Pavlopoulou. I strongly believe in empowerment, transparency as far as possible and coproduction although it is not always possible to do full co-production I was delighted to be in this event somewhere on the ladder of co-production.

• Clenton Farquharson: “I want to be a central part of decision-making”
• Co-production Week

This Co-production Week, at SCIE we want to join with a number of others across social care who have made a pledge:

“We support the full and equal contribution at events from people who draw on or access social care and support”.

It’s just strange – and frankly unacceptable – that in 2021 people organise events, commissions, reviews etc. about people who draw on social care and support and still don’t involve them, or involve them only marginally. As Anna Severwright, from Social Care Future, says:

“Thankfully we have progressed; to a place where if a conference on gender inequality had no female speakers, it would be criticised and probably draw protests. Or an event about tackling racism, had only white experts, rightly it would lack all credibility. And yet social care conferences are full of experts and leaders, who usually have never experienced living with the very thing they are talking about. Or we have to beg to be begrudgingly added last minute as the ‘token service user’”.

• Social Care Future
• Example of a person who draws on services speaking: The Caring View, July 2021

Anna says that her experience of the last two years of Social Care Future gatherings is that the discussions are different when people who draw on care and support are significantly involved. So, it follows that the exclusion of experts-by-experience promotes the design of policy and practice less likely to represent what people want.

I used an analogy – at an event this week – of building a house. If you were designing and building a home, you would want the full and equal contribution of all of the experts in the project; from the architects to the builders and all in between, including you because you’re going to live in it! The same is true in social care: Design the solution with the people for whom the solution is for; and the outcome is likely to be far more successful.

So, this Co-production Week, we at SCIE pledge to support the full and equal contribution at events from people who draw on or access social care and support. But we also pledge to challenge those putting on events to read this blog and take the same action. It’s a great way forward so that social care and support services see people who draw on them as being central to their very existence and hence their design.

• Kathryn tweets @kathryn1smith

Inclusion in events, debates and forums on social care – our commitment

A number of organisations and groups believe people who draw on social care should be properly included & heard in events, debates and forums which discuss social care and therefore affect their lives & support. We are all working to support people’s inclusion. We therefore commit to:

• trive to continuously improve meaningful participation in events and forums we organise and run
• Encourage and support other groups and organisations to make similar efforts, in particular those we are invited to speak or contribute to
• Work with and support Social Care Future and Think Local Act Personal in the development of practical advice and examples that can assist ourselves & others to properly include people
• Provide updates on action, developments and progress in 12 months.

We further encourage other group and organisations to make similar commitments.

• Press report on asylum plans

There are a multitude of actions needed to promote anti-racism within organisations; the one I’m advocating for here is using co-production. Displaced people are often excluded from the service design process as we fear re-traumatisation and face challenges with capacity, managing expectations, cultural sensitivities and language barriers. We may question whether people truly know and understand what services they need, or we may not know where to begin. But designing services that may be based on a paternalistic and privileged view of the world will only get us so far and won’t address the power imbalance that is mirrored throughout society.

• CIPD: Developing an anti-racism strategy

We at Migrant Help have just started on our co-production journey to develop better services by piloting a Lived Experience Advisory Panel with a group of refugees. We hope to find solutions to the participation challenges mentioned above by working in equal partnership and linking in closely with the charity sector. Some key insights so far to support power sharing and equal decision-making have included:

• Having the right culture, structure and governance
• Putting participant wellbeing above all else
• Using creative techniques to support engagement
• Being as accessible as possible
• Recognising participation appropriately.

As part of National Co-production Week, we are launching a co-production page on our website with tips, links and guidance on how to co-produce services with displaced people. We would love this to be a collaborative space so please get in touch with your ideas and experiences. We haven’t got all the answers but hope you will join us in using the power of co-production to help deport racism – for good!

• Migrant Help co-production page

Co-production and Covid-19

During the COVID-19 emergency the CHC Co-Production group has continued to work closely together to ensure that all service users have remained safe during unprecedented circumstances. This includes, sharing regular updates around the pandemic and the revised guidance, details of the local availability of PPE and where to access emergency supplies. During the pandemic the Hampshire CHC and Placements team were also able to quickly offer a 10% uplift in monthly budgets to support users to access additional PPE and other extra costs. The group has also been supporting with feedback around the access of testing and vaccination for PAs, raising issues directly to the Hampshire vaccination team.

Upcoming projects

Over the next year we have a number of new and exciting projects to keep an eye out for. These include, supporting with training of CHC staff and working to improve the availability of training for Personal Assistants in Health and Care in Hampshire, improving CHC letters and working to support the implementation of the personalised care model.

We see Co-production Week as an opportunity for shared learning across partnerships, reflecting on the benefits of co-production and to celebrate the impact and contribution of expert service users and carers in transforming health and social care services.

• Co-production Week

• Barnet Parent Carer Forum
• SCIE’s Co-production Week 2021

Here are just three examples of where co-production is going on locally:

• A parent / carer is now a director on the board of the Education and Learning Service
• Our conferences are co-produced and agendas and speakers mutually agreed
• We have parent/carer representation and input on each of the local authority workstreams including social, emotional and mental health; Autism; Special Education Needs support; and preparing for adulthood.

Co-production and consultation

There are several other areas, from working with mental health services to drawing up local strategies, where co-production is taking place. One area I’d really like to talk about, though, is with surveys. A survey or a consultation can be useful to the powers-that-be, but we try to make sure parent / carers help draft the content of the local ones before they circulated. This means that the right questions are asked and it follows that there’s a higher likelihood of a better response from the people asked to complete it. The parent / carers are the ‘experts by experience’ and so it’s absolutely vital that they are involved at this early stage.

Parents and Carers of children and young people with special educational needs have a great deal of knowledge and expertise and it is hugely important that this is used to inform and improve the decisions being taken by those who develop and provide services for them. Let’s hope that our relationship with commissioners and providers continues, using co-production to guide the conversation.

Many organisations seek out disabled people to sit on their committees because it is part of their equality policy but have little or no regard for what co-production means. But let’s face it – it can look good on their policies and reports to say they included us.

I am in receipt of a Personal Budget from my Local Authority and about 15 years ago they asked me to sit on their Personalisation debate. Due to previous experiences I initially refused but the head of Personalisation hounded me and asked me to meet up with him in my local pub for coffee. He even brought his secretary with him. The meeting went something like this: “Anne – we would really appreciate your input and experiences as you have been in receipt of social care for many years. We feel we could benefit from your input and as a result you would be supporting other disabled people in their ambition to live independently!” Well who on earth could refuse an offer like that?

Just to say I lasted 12 months but when I realised that nothing had changed when they discussed the RAS – this is a way of determining how much social care you were entitled to – I made the decision to leave.

When co-production works it can feel very empowering. Because let’s face it, we all like to think we have made a difference. Working with/for SCIE I have always felt valued, as I have with Shaping Our Lives. Co-production can work but it needs the shift in thinking. Given the opportunity, ‘we’ can make a difference.

• Shaping our Lives

• SCIE: Strengths-based approaches
• Persona Care and Support, Bury

So why am I telling you this?

Because our system for providing care and support rarely allows for people’s strengths to shine through. When we carry out an assessment or put together a care plan, people’s unique talents are unlikely to get a mention. Even if they did, the next layer of risk assessment would manage to suppress any chance of John’s fish catching abilities being employed to useful effect.

Why does this matter?

Is it really a problem that John attends the day service and we never know he can catch a fish with his bare hands? It matters because if John can contribute something to his support, whatever that may be, then he feels proud. So he has moved on from having his basic needs met to boosting his self-esteem. People talk about it and thank him for his help. He becomes a bit of a legend and he glows with pride that he did something good for someone else that day. One of the five Ways to Wellbeing is to give something back and by doing this one thing John boosts his own wellbeing. Not only that, he gains a purpose – he becomes part of the fish tank cleaning routine and he looks forward to the next time he can lend a hand.

Sustainable social care needs to create the conditions that allow people’s strengths to shine. We must move away from a model of passive recipients to active participants and give people the opportunity to catch that fish.

• Kat Tweets @Kat_sowden
• Persona Care and Support, Bury – on Twitter

A is for Advocacy

Advocacy comes in many shapes and sizes. It is a crucial role in supporting an individual to speak up, or to be their voice, for their views and wishes and is absolutely the cornerstone of social care. Having strong advocates is a sign of a well functioning system. This helpful document will give you a nod in the right direction if you need any help with an advocacy related decision:

• Guidance to support advocates in challenging decisions or actions with or on behalf of individuals

B is for Balance sheet (and Best Interests)

Balance sheets are great. We use them all the time but in the context of MCA and decisions that can be made, a balance sheet really helps to show your working to anyone that might wonder what was considered and highlighting ‘relevant factors’ in the decision. It is important to note that balance sheets should be used as an aid to thinking, not as a substitute (see Re F (A Child) (International Relocation Cases) [2015] EWCA Civ 882). Often in case law you can see the use of the balance sheet process in the Court of Protection, particularly more recently when making decisions about giving the Covid 19 vaccination to individuals unable to consent and whose family were objecting against it. See the example below.

• Vaccination – looking at all the relevant circumstances

C is for Causative Nexus

Are you satisfied that the inability to make a decision is because of the impairment of the mind or brain? The Court of Appeal has made clear that the process to complete a capacity assessment should not start with determining the impairment or disturbance of the mind or brain – this should follow after the determination that a person is unable to understand, use, weigh, retain or communicate and then determine why that may be. Starting with that the person appears to have difficulty doing also helps you with the support principle: if you can help them overcome that difficulty, they have capacity to make the decision, and you don’t need go to further.

D is for Determination, Decision specific, and Dignity

No one should start a capacity assessment without being clear about the decision that needs to be made. Sometimes, decisions need to be broken down, there may be more than one decision to make at any one time. Don’t make it too difficult for someone to be a part of that decision by making it too complex or difficult to understand. Finally make sure to look at the final decisions together as a complete picture and ensure the outcomes of those decisions work together. Determination should be the determination to uphold rights but it is also an important term to differentiate between the process of thinking about capacity (the capacity assessment process) and the conclusion and recording (determination) of that thinking. This also relates to Dignity, and the importance of dignity in Mental Capacity Assessments. Advanced Statements and Advanced Decisions are vital here, dignity is subjective. To one person it may be- A statement not to receive Clinically Assisted Nutrition and Hydration (CANH) .To another it may be honouring their right to private and family life, respecting people’s wishes and feelings is key in promoting dignity in decision making.

E is for evidence

There is a reason it is regularly stated you need to ‘show your workings’ in Mental Capacity Assessments. Making any decision on behalf of an individual must be based on evidence.

• See this guide from 39 Essex Chambers

F is for RE FX

The presumption of capacity is so important in MCA and this case has significant learning in that spending time getting to know the person can be make or break in assessing capacity. In this case the Social Worker had the advantage of being able to build up rapport over a number of visits whereas the medical professional cited in the judgment was unable to do this and it seems as though the two came back with quite different reports with the judge siding with the social workers conclusion that FX had capacity

G is for guidance

In particular differentiating between following guidance and following law. Differentiating between following ‘regulations’ (Law) and Codes of Practice (Guidance). One example of this is recent guidance on issues relating to testing, vaccinations and self-isolation. Some directions are set down in Law such as the need to self-isolate when you’ve tested positive for Covid-19.. Some directions such as the need to isolate after visiting certain places, is set in guidance (at the time of writing). What has never changed is the need to follow the Mental Capacity Act and Deprivation of Liberty Safeguards when implementing any restrictions on a person unable to consent to the arrangements. We rely on our legal services to interpret interactions between law and guidance.

H is for Happiness, Human Rights and Hayden

Happiness may seem a simple concept, however seldom is it a significant consideration in best interests decision making. We all strive for happiness, happiness means different things for different people. Striving for happiness also strives for Human Rights Based Practice. How can we forget the important quote from Munby ‘what good is making someone safer, if it merely makes them miserable’. The Human Rights Act should always be central to decision making. Understanding that when you make decisions on behalf of an individual, involving where they live, the care they receive and the contact they have with others – they’re all protected rights under the Human Rights Act. And Hayden – the Vice President of the Court of Protection and supplier of some of the more recent revered quotes in Mental Capacity Law:

• A Local Authority -v- C and ors

I is for IMCAs

IMCAs (Independent Mental Capacity Advocates) are a safeguard for people who lack capacity to make some important decisions. The IMCA role is to support and represent the person in the decision-making process. Essentially they make sure that the Mental Capacity Act 2005 is being followed.

J is for JUMP

The Reason I Jump is a book written by Naoki Higashida and a reminder about what lengths we should be aiming for when working with people who have difficulty with communication. It will make you re-evaluate what lengths we should go to in order to support someone who has difficulty verbally communicating.

• The Reason I Jump

K is for CC v KK And K

• The assumption of capacity the case of CC-v-KK [2012]

“There is, I perceive, a danger that professionals, including judges, may objectively conflate a capacity assessment with a best interests analysis ‘CC v KK & STCC”

L is for Lasting Power of Attorney

The lawful authority to make decisions for someone when they are no longer able. Every so often we hear about situations where an attorney clearly isn’t acting in the persons best interest or that the professional involved hasn’t thought to check if an LPA exists. If in doubt you can check the status of an LPA below.

• Find out if someone has an attorney, deputy or guardian acting for them

M is for Munby

And what will be his epitaph “What’s the point of making people safe if it merely makes them miserable”. That well spoken line is so true and so honest that it never gets old. Before his retirement Sir James Munby was one of the most prominent and well known Court of Protection Judges.

N is for Neary

Steven and Mark Neary are the pinnacle of why Human Rights based practice is so important. If you want an example of how NOT to use the Mental Capacity Act and Deprivation of Liberty Safeguards, read the outcome of London Borough of Hillingdon V Neary.

• London Borough of Hillingdon v Neary

O is for Open Justice Project

A project founded by Celia Kitzinger and Gill Loomes-Quinn, it aims to make observing Court of Protection cases, more easily accessible to anyone wanting to learn more about how Mental Capacity Act cases are dealt with in Court. Celia and Gill helpfully blog cases that deal with complex issues such as life sustaining treatment, sex, and 21a appeals.

P is for Practicable steps

No one should be deemed to lack capacity to make a specific decision unless all ‘practicable steps’ have been taken to support them to make the decision. ‘Practicable steps’ might involve referring to supporting agencies such as advocacy, interpreters, Speech and Language Therapy, and learning disability nurses – to work with the person to help them understand the relevant information.

Q is for P&Q vs Surrey

The first decision on what constituted a Deprivation of Liberty, before the decision was finalised by the Supreme Court in ‘Cheshire West’. It involved ‘Mig and Meg’ an 18 and 19 year old in two different settings and opened discussion about the ‘relative normality’ of the arrangements based on the person’s needs, that later became part of the final Supreme Court Judgement and lady Hale declaring ‘A gilded cage is still a cage’.

R is for Ruck-Keene (Alex)

the face and name that comes to mind with anything Mental Capacity Law. Alex (along with his colleagues at 39 Essex Chambers) are the social care sectors go-to for advice on how to implement the Mental Capacity Act in practice and produce incredibly useful resources, that are both timely and informative. We recommend visiting (capacity law) and signing up for 39 Essex Chambers reports.

• Capacity Law
• Alex Ruck Keene blogs for SCIE about LPS

S is for Sex

The MCA can permeate every aspect of life up to and including the most intimate areas of someone’s private life. There have been a number of recent cases, testing the idea of capacity for sexual relations. The Most prominent being the Supreme Court ruling in the case of JB determining new relevant information when assessing capacity and that ‘Pragmatism does not require that consent to future sexual relations can only be assessed on a general and non-specific basis’. Capacity and sex – the Supreme Court decision in JB | 39 Essex Chambers, Capacity, consent and sexual relations – the Supreme Court decides – Mental Capacity Law and Policy. https://www.mentalcapacitylawandpolicy.org.uk/capacity-consent-and-sexual-relations-the-supreme-court-decides/

T is for talking Mats

A really helpful resource to aid decision making and to document a persons wishes & feelings on a specific subject. Search: ‘Talking Mats’

U is for unwise decisions

we all make them and people that have health and social care involved seem to have any decisions scrutinised as if somehow they have to be run by the professional involved. The wording of the Act is ‘a person is not to be treated as unable to make a decision merely because he makes an unwise decision’. This is an important nuance on the often-heard statement that a person has the right to make unwise decisions. There are plenty of great cases to provide examples, but one that always comes to mind is the ‘woman who lost her sparkle’ or ‘C’.

V is for voting rights and values

A lack of mental capacity is not a legal incapacity to vote.1 Persons who meet the other registration qualifications are eligible for registration regardless of their mental capacityThe Electoral Commission

Being aware of your value base is key to ensuring that you understand how to apply the Mental Capacity Act with a Human Rights focus. When you decide to complete a Mental Capacity Assessment, first ask why you think one is required and reflect on it.

W is for Wye Valley and wishes and feelings/will and preferences

We take note of Article 12 of the United Nations Convention on the Rights of People with Disabilities (CRPD) and want that to influence practice. The way we do that to be compatible with the Mental Capacity Act is that we pay close attention to wishes and feelings when constructing a best interest decision. That way we are ensuring that the person we are supporting has their voice right in the heart of decision making. You can see recent challenges in the Court of Protection, when trying to understand and achieve what a person really wants. This has been recently explored in decisions around vaccinations and withdrawing life sustaining treatment.

X is for Re X

• Re X (Court of Protection Practice)

One of the drawbacks (of which there are many) of the original DoLS scheme is the fact that when Supreme Court handed down the Cheshire West judgement, as well making applications soar through the roof it also posed the question about deprivation of Liberty in other settings such as shared lives schemes, supported living or the individuals own homes. The Re X procedure was the courts way allowing people to streamline the process. although it doesn’t seem very streamlined given the months it takes to process sometimes.

Y is for Re Y

A Supreme Court decision that not all cases regarding the decision to withdraw Clinically Assisted Nutrition and Hydration, need to go to Court for a decision.

• The Mental Capacity Act after Re Y

As long as family and professionals are in agreement, the decision can be made by the relevant clinician, following the MCA – BMA guidance.

• MCA – BMA guidance

Z is for Zone of Parental Control

“People with parental responsibility may in certain circumstances […] consent on behalf of a child under 16 to them being given medical treatment or being admitted informally for such treatment.” The moment that a young person wakes up on the morning of their 16th birthday, they are presumed to have the capacity to make their own decisions under the MCA. If on their 16th birthday the person does not have capacity to make a particular decision, a decision will need to be made as to whether to use the MCA or whether the decision falls under the zone of parental consent. In Re D [2019] UKSC 42, the Supreme Court held that where a 16 or 17 year old child cannot (or does not) give their own consent to circumstances satisfying the ‘acid test’ in Cheshire West, and if state either knows or ought to know of the circumstances, then the child is to be seen as deprived of their liberty. That is so whether or not their parent(s) are either seeking to consent to those arrangements if imposed by others or directly implementing them themselves.

More selected reading

• Book: Life, death and the journeys in between
• Book: Social Work, Cats and Rocket Science. Editors: Rob Mitchell, Hannah Morgan, Elaine James, Mark Harvey, Ian Burgess.
• Blog: Lucy Series – Small Places
• SCIE: Liberty Protection Safeguards

• SCIE: LPS resources
• Webinar recording and slides from April 2021
• Essex Chambers

When it comes to capacity, it is important – already – to consider whether the person can process the information that they are confined (See the case below). This will be central to the capacity test to be applied to LPS in due course, so getting familiar with this now will ease the transition.

• A PCT v LDV, CC & B Healthcare Group

Similarly, when it comes to thinking about the best interests requirement under DoLS, the greater the focus upon the consideration of necessity and proportionality (which forms part of the test), the readier you will be for the total focus upon this aspect under LPS.

• Alex Tweets @Capacitylaw

Finally, making applications for so-called ‘community DoL’ orders is not only necessary at the moment to provide lawful authority to deprive someone outside the scope of DoLS. It is also the best form of training for LPS that can you undertake – it is, in essence, asking the same questions, and posing the same requirements in terms of such things as consultation, as will be required under the LPS. The sole difference is that, at present, the final application goes to judge, rather than, as will be the case in future, it will for Pre-Authorisation Review organised by the Responsible Body. For more detail about how to make such applications, see the guidance note below.

• Judicial Deprivation Liberty Authorisations

• SCIE: COVID-19 advice for social care
• SUST Sheffield: Trainers and consultants with lived experience of mental health problems.

The arbitrary diktats of decision makers are not necessarily malevolent and uncaring, but their consequences can be felt as if they were. The manifold achievements of movements for social change have made the world a better place for many of us, but they are yet to radically alter the status quo, which remains intact to further the cause of vested interests. We might be all in it together, but some of us are in it more deeply than others.

One of the consequences of the response from health and social care organisations to the emergence of COVID-19 has been to side-line ideas like co-production, to treat them as luxuries that can be explored at leisure once more important and pressing demands have been dealt with. This approach represents a form of paternalism that is diametrically opposed to the values that underpin co-production.

I do not doubt that including people with lived experience of a range of disabilities would have resulted in a better response to the suffering caused by the pandemic. Fewer people would have died and more people would have flourished.

The task facing co-production activists who are grounded in their commitment to fighting for the rights of disabled people is to find new ways of working together with the aim of making the idea of ‘Nothing about us without us’ a living reality.

And the duty of decision makers is to act on what we say.

• Patrick is Co-ordinator of SUST, the Sheffield based network of trainers and consultants with lived experience of mental health problems.
• Patrick tweets @pwtc_wood