In 1989, I, went to Sweden with a group of disabled young people, to see what lessons could be learnt from the Swedish approach to supporting people with disabilities.

32 years later, one of these now not so young people ,Don, has written this powerful book about his and experiences of trying to have his voice heard and his needs met from the care system.

At the heart of the book is a collection of case studies which show how some disabled people are living in a state of fear and left to struggle without the information and care they need to live a happy life. The case studies are a powerful insight into the alarming and disturbing treatment of some disabled people at the hands of social workers and the adult social care system. They illustrate the failure of the social work industry to carry out their duties and responsibilities and the lack of ethics and empathy in the way some social workers practise.

“The case studies give a frank and detailed account of what it can be like for adult social care service users dealing with social workers and the hoops they have to jump through to get what they are entitled to.”  

“The voice of disabled people who suffer on the receiving end of adult social care should be heard so that improvements are made in the way adult social care is administered. “

You might not agree with all of Don’s observations or those of the other disabled people he interviewed, but  the book deserves to be read if only to remind everyone responsible for developing and delivering care, how important it is to systemically embed the voice and lived experience of disabled people into the management and evaluation of the care system. The book also outlines ways money could be saved and how budgets could be used more effectively.

“The Book is a raw reminder of how people can be left behind and ignored and how legislation does not always lead to culture changes in service delivery.”

The booked can be ordered, here. 

This blog was originally published by Leicestershire Cares.

ExChange Wales is not responsible for any external content or resources.

Louise Roberts, Dawn Mannay, Alyson Rees, Hannah Bayfield, Cindy Corliss, Clive Diaz and Rachel Vaughan

Transitions to adulthood take place from different starting points and with differential access to available resources. For some young people this may be a time of choice and freedom, but many young people find that their agency is constrained by precarity in the labour market and shifting discourses of support and independence. Young people leaving care can be disadvantaged in these transitions as they are often required to manage multiple changes simultaneously, such as leaving education, leaving care, starting new education or employment, and living independently. Additionally, they may not have access to familial networks or a culture of parental dependence as a strategy for coping with risks in a precarious environment. Therefore, the COVID-19 pandemic has brought additional risks and stresses for young people leaving care. This study was commissioned by Voices from Care Cymru, and it sought to offer a platform for the experiences of 21 young people who had left or were leaving state care during the COVID-19 pandemic. The urgency to accommodate young people during the pandemic was discussed, which sometimes led to inappropriate placements such as this hostel for adults.

‘There are still a lot of people drinking in each other’s rooms… there was an incident where police got called cos three people claimed they had been spiked by a resident from an illegal substance… [an older women] was messaging me nasty things… It’s got to the point where I am just in my room all the time’ (Amy)

There were also examples of impacts on employment. Paul experienced COVID-19 symptoms and lost income as a result but had no wider support systems to draw on.

‘So obviously that impacted a lot on paying my rent and stuff like that. So it’s been a lot of stress then, stuck in on my own in a lot of debt. It’s stressful. I’m still in debt now’ (Paul)

These may be experiences shared by many young people who are transitioning to adulthood in the COVID-19 pandemic. However, for those leaving care, these challenges are accentuated and at the same time the necessary resources for security and support are more difficult to access – making already difficult transitions to adulthood ‘a massive struggle’. It should be the legislative right of young people to access leaving care services so they cannot be withdrawn in a crisis. For young people who have left care during COVID-19 funding is required to ward against further cumulative disadvantage in the longer-term.

For more information about this study see – Roberts, L., Mannay, D., Rees, A., Bayfield, H., Corliss, C., Diaz, C. and Vaughan, R. 2021. ‘It’s been a massive struggle’: Exploring the experiences of young people leaving care during COVID-19. YOUNG. https://doi.org/10.1177/11033088211025949

You might also be interested in these topic related blogs hosted on Family and Community.

‘You gave me the opportunity to create memories taken for granted by many others – normally family type of trips we miss out on. I actually have something to look back on for what is one of the most unsettled/lonely parts of a care-experienced young person’s life.’
Mind Matters participant

Poor mental wellbeing is commonly associated with care-experienced young people. Their experiences in lacking positive family or peer groups support can also introduce a sense of loneliness. But positive activities can help to shift the state of mind to a brighter outlook.

Our Mind Matters project was launched in 2020 after Leicester City Council asked Leicestershire Cares to explore the mental wellbeing needs of local care-experienced young people. After one year of the project these are our findings:

Co-production of Mind Matters

Leicestershire Cares set up a consultation team made up of five care-experienced young people to develop the initial plan for the project’s purpose (strengthen their resilience and wellbeing), its scope, deliverables and its name. We held three meetings to discuss the project and what it could deliver for young people, including discussions of the impact of the pandemic on young people’s mental health and isolation, high levels of boredom, lack of connectivity and poor eating habits. Ideas for the Fakeaways, crafternoons and regular online social sessions emerged from these discussions. This co-production model gave the care-experienced young people tools as well as ownership of the solutions that would help to improve their wellbeing.

Online activities

At the start of lockdown, we quickly moved our support online and provided young people with data SIMs and/or laptops to ensure they could access digital activities. When Mind Matters started in July 2021, we already had a few months’ experience of delivering engaging virtual activities and built on this to ensure that Mind Matters was a success. We used our findings from our ‘Life Under Lockdown’ report (May 2020) to create a programme that would be robust, practical and inclusive. Crafternoons engaged eight young people in a six-week programme of arts and crafts activities on Zoom, along with a facilitator who encouraged them to use arts and crafts as a way of improving wellbeing. The young people reported feeling more relaxed, less anxious, and enjoyed learning a new hobby together.

Doing these activities [arts and craft sessions] allows me spread my creativity to others and that is my passion. As I have anxiety, I don’t cope well in groups but having a thing to do, takes your mind off of being in a group and you just start having conversations with people.
Mind Matters participant

Fakeaways was a great success. This fortnightly Zoom cooking session – taught by a professional cooking tutor from the Adult Education Centre, involved young people making healthy versions of the takeaways they had been buying during lockdown. The young people were then empowered to run the sessions themselves, sharing recipes that connected them to their estranged families and heritage and promoting conversations about their shared lived experience.

We had 12 regular attendees at Fakeaways, and occasionally more, and the session feedback was very positive, reporting improved confidence, money saving, healthier eating and weight loss. Those with children noted that cooking together helped to improve their relationship with their child.

The confidence I have gained cooking for myself is incredible. I never thought I would be able to make tasty dishes for under £10 and really enjoy them too!
Mind Matters participant

I have saved so much money not buying microwave meals and getting rid of my fear of feeling I can’t cook. Thank you!
Mind Matters participant

Coming out of lockdown

Young people joined weekly online Chill & Chat sessions featuring film nights, quizzes, and general chats. In the autumn we were able to hold socially distanced outdoor activities, including picnics, healthy eating sessions at a local community allotment, an outdoor Christmas party, a barbecue, canoeing at the Outdoor Pursuits Centre, wood carving and gardening projects. In total, over 30 young people took part in these activities, the majority of whom said that they had helped them reconnect with other young people and feel less isolated.

Being able to see people’s faces and have a face-to-face conversations feels so natural, but has been something that has been so hard to find over these last five months. It’s opportunities like this that Leicestershire Cares offer that are so positive for me holistically.
Mind Matters participant

Long-term benefits

As well as gaining new cooking skills and an understanding of healthy eating from Fakeaways, young people said that the social activities have given them more confidence in engaging with others, given them a sense of belonging and helped them feel able to talk about their experience of being in care.

Being involved in the activities that Leicestershire Cares run means that I am able to get out and be more involved in activities which involve socialising in a group. It allows me to meet new people and feel part of a team.
Mind Matters participant

My confidence has increased and I feel safer talking about my real life as a care-experienced person. Leicestershire Cares gave me a safe space to recognise it’s okay to embrace that part of myself.
Mind Matters participant

Some spoke about feeling more independent which has encouraged them to consider what they want to do next in terms of volunteering, training or employment, and how their decisions could support their mental health.

It helped me become more confident and helps you towards independence… I’d like opportunities to try vol or paid jobs to do with animals. I think that would improve my mental health.
Mind Matters participant

While others have appreciated the chance to catch up on life that was on hold, and to create memories that many traditional families take for granted.

You also gave me the opportunity to create memories taken for granted by many others, like Go-karting and Beaumanor Hall – normally family type trips we miss out on. I actually have something to look back on for what is one of the most unsettled/lonely parts of a care-experienced young person’s life.
Mind Matters participant

Going forwards

As lockdown restrictions ease, we’ll return more to face-to-face delivery, but we’ll also maintain a hybrid model of both online and face-to-face support. We feel that virtual delivery has a role to play, especially for young people who have travel anxiety or are very busy with other commitments (e.g. college) and want to join via video call.

Our steering group suggested what they would want from the programme if it would continue such as including more focus around how to manage mental health and develop positive thinking; social activities to develop life skills; and activities which promote physical fitness as well as mental wellbeing.

I really enjoy any opportunity to get outside and do something especially with other CEP. It gives me a chance to socialise in that safe space and kick myself out of bed that day. Practical things are particularly good i.e. cooking and woodworking as they can have real life applications.
Mind Matters participant

The young people also identified that the power of ‘giving back’ and connecting with their local community has an effect on their self-esteem and mental wellbeing. They suggested they might raise money for a local cause in various ways, i.e. a sponsored 24-hour gaming marathon, cake bake, art auction or a sponsored walk.

The steering group also introduced the idea of a life coach as a useful support for those who might want specific advice on how to progress towards their goals. Leicestershire Cares has recently started a business volunteer mentoring programme for care-experienced young people. We’re finding that some of the outcomes are improving mental wellbeing, and overall, the widening of these young people’s networks are helping them to grow.

Leicestershire Cares is a wonderful organisation to work with. The commitment and passion for supporting young people is evident from early interactions. The innovation in project development and commitment to agreed outcomes has been outstanding!
Diana Dorozkinaite, Business Change Commissioning Manager, Leicester City Council

For more information about our work with care-experienced young people, please contact Jacob Brown.

To read the full article, visit the Leicestershire Cares website.

Information for parents/carers

What is the study about and who is leading it?

The SPARKLE (Supporting Parents and Kids through Lockdown Experiences) study team, based at King’s College London and Oxford University, are looking for UK parent/carer participants to test their new specially-designed science-based ‘parent positive’ app which aims to provide parenting advice and multimedia resources developed with experts and celebrity parents to support UK parents and children during the transition out of the Covid-19 pandemic.

The Parent positive app aims to improve children’s behaviour and confidence and have a positive effect on parents’ wellbeing. The app will also provide access to regular online sessions with parenting experts and the chance to join an online forum to meet parents/carers across the UK and share parenting advice and tips.

What will I need to do?

First, complete the Oxford University survey. Half of parents/carers will be given access to the parent positive app immediately, and half after about two months. All parents/carers will complete online questionnaires about themselves and their child once per month. All participants will receive access to the free app & 2 £5 e-shopping vouchers as a thank you for taking part.

Who’s eligible to take part?

UK parents/carers of children aged 4-10, and UK parents/carers who have access to a smartphone with operating system OS 8-9 or higher for android, or IOS 12-13 or higher for Apple.

More information on the study

What are we focusing on?

The SPARKLE study trial was launched in December 2020 at King’s College London. The trial is led by Professor Edmund Sonuga-Barke and Dr Kasia Kostyrka-Allchorne of the Experimental Psychopathology and Neurodevelopment (ExPAND) Research Group within the Department of Child & Adolescent Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience.

We were motivated to launch the study by findings from the Oxford University ‘Co-SPACE: Supporting Parents, Adolescents and Children During Epidemics’ study – a UKRI-funded cohort study tracking changes in families’ mental health 2020 onwards. The study found that up to 70% of parents reported wanting additional support to address behavioural problems in their children and an increase in family-related stress in response to various local and national lockdowns throughout the COVID-19 pandemic. This was as a result of a combination of reduced access to childcare, money-and health-related worries and extended confinement and social isolation, all of which have placed great pressure on many families in the UK.

What are our aims and what methodology are we using?

SPARKLE is a rapid-deployment randomised control trial evaluating whether a digital public health parenting intervention can help parents to manage their children’s behaviour problems, as impacted by the COVID-19 UK pandemic and lockdown.

We aim to evaluate whether the negative effects of lockdown can by reversed by providing parenting advice digitally, using a specially-designed mobile phone app, Parent Positive. The Parent Positive app will provide advice to parents through animations, delivering messages carefully selected by parents and experts in the field. The messages will be supplemented with practical parenting resources and an opportunity to network with other parents for peer support. The animations, originally thought up by Professor Sonuga-Barke and the King’s College London Parenting Under Pressure (POP-UP) team, are light-hearted, humorous and non-judgmental and are delivered by eight high-profile celebrities who are also parents. The eight messages relate to:

• staying positive and motivated (Olivia Colman)
• making sure everyone knows what is expected of them (Sharon Horgan)
• building your child’s self-confidence and trust (Danny Dyer)
• getting your child to follow instructions (Rob Brydon)
• promoting better behaviour (Jessica Ennis-Hill)
• limiting conflict (Holly Willoughby)
• keeping calm when your kids act up (Romesh Ranganathan), and
• careful use of sanctions (Shappi Khorsandi).

The initial stage of the SPARKLE study will involve 616 Co-SPACE parents, half of whom will receive access to the Parent Positive app and half who won’t. If results from the trial are positive, the app will be nationally disseminated through our collaboration with Public Health England, the UK Department for Education and multiple other commercial media partners.

Who are our key partners?

Our study is working in collaboration with the Oxford Psychological Interventions for Children and Adolescents (TOPIC) Research Group, Department of Experimental Psychology, University of Oxford Medical Sciences Division as well as the Guy’s & St. Thomas’ Charitable Foundation-funded Centre for Child & Parent Support Led by Dr Crispin Day, and is funded by UKRI-ESRC. The study will be delivered alongside colleagues at Oxford University responsible for the ‘Co-SPACE: Supporting Parents, Adolescents and Children During Epidemics’ study – a UKRI-funded cohort study tracking changes in families’ mental health 2020 onwards.

Read the summary paper:

More information about the study can be found at kcl.ac.uk.

View the Parent Positive App animation.

In collaboration with research and clinical experts, the Co-RAY project have produced briefings which provide evidence-informed messages on how to support young people with these four key issues during the COVID-19 pandemic, and beyond.

The project has identified four key priority areas, which will be the focus of resource production during the first half of 2021:  

a) managing change and uncertainty
b) feeling bored, flat and unmotivated
c) feeling lonely, isolated and disconnected
d) encouraging young people to seek help if they are struggling with their mental health.

Briefings available for download (PDF)

Please visit the Co-Ray project page for the original posting.