Health and Inequalities Challenge Prize 2023 Blog

Health Inequalities Challenge Prize – Blog September 2023 

 

The project has gotten off to a positive start. We received a referral prior to the schools breaking up in July, not long after we were awarded the funding, so it was great to be able to work on this over the summer and deliver a positive outcome. We have now reopened for referrals in South Cambs following the summer break and we think I imagine we will soon identify the rest of the referrals for the pilot prior to the funding period ending in November.  

We have been working on further refining and developing our model over the summer months – we have started to embed this across the organisation based on what we have learned already and how a flexible funding approach is essential in responding to childhood trauma and the difficulties families can face from this, particularly when it is intergenerational in character and linked to financial deprivation and disadvantage as well. In September, we trained our entire team in this model to ensure it is systemically embedded across our organisation, so we already feel that the impact of this funding is wide. Indeed, we refer to this model as our ‘panoramic’ approach to supporting children and families and more information about this will be published on our website in due course. 

Excitingly, we have also recently begun a collaboration with the Rudd Centre at the University of Cambridge and have begun talking to them about the evidence base for our model. One of the challenges small charities such as ourselves frequently face is around building an evidence base for the interventions that we offer and deliver. This is particularly the case with this current pilot project as flexible funding is an approach, based fundamentally on trauma-informed and therapeutic principles (and the shared decision-making model used within, amongst others, the NHS – see Elwyn et al. 2010). But it is an approach, not an intervention as such, and, therefore, very difficult to investigate clinically when the flexible and bespoke package of support provided to each child or young person is so different (for example, music therapy and swimming lessons vs dramatherapy and parkour!). We are talking with the Rudd Centre about this problem and looking at the evidence base which informs our model – it is, for example, fundamentally embedded in the principles in Section 8 of the Children Act 1989 which we feel is a strong place for us to be starting from!  

Read Challenge Prize Blog 1…

My Story My Way- a fun summer photography activity to create Unique Feet Part 2 

 

We’ve blinked, and our Unique Feet Young People have grown up! So, we’ve asked them and their families to help us grow up alongside them by joining us on a summer fun project. 

We said: 

We’d love to know more about you and what is important to you. 

 

We organised and posted an exciting package to our seven participating families to achieve this. This consisted of two cameras. What for?? To let them tell us their story in their own way. 

 

Armed with two cameras - one with colour film and the other monochrome - we tasked them to get snapping throughout August! Our young person used the colour, and they gifted the black and white camera to someone in their family or a friend.  

 

We said: 

“Think about what you’ve achieved, what you are proud of, and whatever  interests you. No matter how big or small, we’d love to see the things, people and places that matter most to you.” 

 

Take selfies, pictures of your favourite things, favourite places, special outfits, your most enjoyable hobby, or anything else you want to take a picture of - go for it!” 

 

“It’s your camera, and we’d love to see your world how you see it.” 

 

To support our young people and families, we asked our expert, Graham, to make a short film to show them how to use their very cool Lomo cameras. 

 

We also produced a super cool guidebook for them and sent it a hard copy so they could use it as a project book to brainstorm ideas and plan the pictures they wanted to capture. 

 

Finally, we’ve sent out stamped addressed envelopes and sorted for a Postie to collect and deliver the films to Graham, who will get them scanned for printing and working with on our day trip out on 1st October to explore our UF next steps with our young people and families.

Our family members expressed:

“We enjoyed the challenge of taking the photos… on this type of camera! Very retro. It allowed us to giggle in some situations, which is always good. Eric did make lists but chose pictures to take away from the themes. We are looking forward to seeing the results from everyone’s cameras. We would love to do it again, but maybe with a longer time frame to gather images.” Alison, Unique Feet young person’s mum.

We, too, can’t wait to see the results currently being developed!We hope to have an insight into their world and help create a Unique Feet v.2 that grows with them into adulthood.

Read Unique Feet Blog 1…

My Story My Way. Embracing all ‘Voices’: Inclusive Advocacy for Young People with Different Communication Styles Living with Rare Diseases

CamRARE supports families affected by rare diseases (RD) through our 'Unique Feet' (UF) community group, where children, young people, young adults, and their families feel connected, understood, and supported. We provide local, accessible, inclusive activities and services to meet their needs.

Since Unique Feet's launch, we’ve been a huge part of our young persons’ journey as they transition through their teenage years, and we want to support them now to have positive and meaningful adult lives. How do we uncover their transition experiences and co-produce interventions to smooth their journey to adulthood? Do we know the impact transition has on their siblings?

 

Challenges in Communicating Rare Disease Voices

We recognise that young people with rare diseases who communicate differently or have intellectual disabilities face barriers when traditional communication methods, such as spoken language, hinder their ability to articulate their needs and challenges effectively.

To tackle this holistically, we Had a Huddle.

We gathered a team of experts on 31st July, with whom we have collaborated to develop creative techniques to help access, reveal and represent the social worlds of young people like ours and their families.

 

Meet our experts:

Graham lives in Scotland and is a ‘Documentary Photographer’; he loves to tell stories and will provide a little guidance and inspire our families to tell their stories.

 

Anna Todd, a journalist by trade, previously worked in TV, radio and online. She's currently a communications and engagement manager for the Cambridge Children's Hospital project.  Anna is passionate about supporting children, young people, and families to share their stories. Her greatest joy is making content for charities; she has loved working with CamRARE.

 

Katie is a young person living with a rare disease. She is passionate about helping other young people with rare diseases and ensuring that their point of view is always considered. She also loves creativity, so she has many ideas to help tell those stories!

 

Framing the project

To hear these voices, we agreed that we needed to create an inclusive expression framework tailored to accommodate various learning styles and cognitive abilities. This framework means we can employ accessible formats to empower our young people to share their experiences and insights.  We've also created a dedicated WhatsApp group for the families, and we’re building a detailed project plan to keep us on schedule.

‘Take a Trip.’

We’re now preparing all the materials to support our day trip (Take a Trip) with our older UF young people. Anna is collating a montage of our group in film to celebrate their growth and journey as a community. We’ve also completed our summer photography fun project, where our group took photos of what makes them happy, what they are proud of, and what they like.

We’ve secretly asked families to send us one of their favourite photos of their child participating in an activity. We’ll show this film on 1st October when we have our day out at Shepreth Wildlife Park.

Read CamRARE Blog 1…

Mindfulness is not just for your mind – it’s also good for your heart

Mindfulness has been a buzz word in mental health and self-help circles for some time now. At its core, mindfulness simply means paying full attention to the present moment by having a non-judgemental awareness of our thoughts, feelings, bodily sensations, and the environment around us. Focusing on the present moment is helpful because we can get trapped in unhelpful thought cycles when we continuously think about what has happened in the past or worry about something that might happen in the future.

As well as helping with our thought patterns, recent research suggests that mindfulness may also have physical health benefits. This is incredibly important, particularly in relation to Cardiovascular diseases (CVDs). The World Health Organisation tells us that CVDs are the leading cause of death globally, and data from the British Heart Foundation shows that in Cambridgeshire and Peterborough alone, 113,000* people are living with a CVD, and someone dies from a CVD every 5 hours. CVDs are a group of disorders of the heart and blood vessels and include coronary heart disease, cerebrovascular disease, rheumatic heart disease and other conditions. More than four out of five CVD deaths are due to heart attacks and strokes, and one third of these deaths occur prematurely in people under 70 years of age.

A scientific paper published in the journal Brain Sciences finds that mindfulness can play an important role in reducing your risk for, and recovery from, CVDs. In a review of dozens of studies, researchers concluded that mindfulness leads to benefits for several factors associated with heart disease and should form part of a CVD care plan. Mindfulness based interventions have a positive influence on psychological CVD risk factors such as anxiety and depression, and also improve physiological fitness by reducing blood pressure, heart palpitations and heart rate.

"Not only can mindfulness improve how your heart functions, but a regular mindfulness practice can support your resilience and help you to maintain many heart-healthy behaviours, such as getting enough sleep," says Dr. Adele Pacini, Project Lead for the Mindfulness for Later Life Program at Gatehouse Charity. “We have delivered this project online over the past few years and our outcomes show that participants consistently reduce their depression and anxiety levels, increase their resilience, and improve their sleep.”

With funding from Cambridgeshire and Peterborough ICS Health Inequalities Challenge Prize, we are piloting the Mindfulness for Later Life Program for local residents, and taking a particular look at outcomes for people with CVDs. To find out more about the program or to make an application to attend, please visit our website.

* British Heart Foundation figure (Cambridgeshire / Peterborough) based on BHF estimates of the latest GP prevalence data from NHS England and latest health surveys with CVD fieldwork; NHS England.

Read Gatehouse blog - Mindfulness…

Illuminate Charity has been offering wellbeing coaching for 15 years, highlighting the benefits and impact of coaching to bridge the divide between therapy and mental health.

The Health Inequalities Challenge Prize has allowed our team of coaches to help improve the lives of 12 unemployed participants through our Coaching for Confidence Programme. The focus of the program is mental health managing and improving, reigniting motivation, and setting achievable goals to improve self-confidence and wellbeing. The program so far is producing excellent results, that underpin the power of our work even within a tight time limit.

The participants, known as ‘coachees’, are matched with their Illuminate coach and the process begins with coachees completing a starter form recording their answers to three specific starter questions. This way we gain a snapshot at the start and end of the program which will feed into a final report.

In line with our commitment to personal development, coachees have a follow-up call 14 days after their final coaching session. This step is important in ensuring that the strategies discussed and utilised during coaching are integrated into their daily lives.

Each coachee has three hours of one-to-one online coaching. We acknowledge that some who would like and need to access the coaching are deterred or left out because of technology. However, we are aware of this and will deliver an in-person workshop in the autumn group coaching focusing on self-confidence and wellbeing.

One of the Coaching for Confidence key pillars is the art of setting small, achievable goals. Coachees are encouraged and skilfully coached to think beyond their comfort zone but within the realm of attainability. The small steps and goals not only increase self-confidence but also help them move towards reclaiming their motivation when often there is a belief that there is none.

We ask coachees for commitment and ensure they understand what coaching is as opposed to counselling and therapy. This is not only written but also discussed in an informal introduction chat with their coach so the aims are clear.

One of our former coachees commented: “Having the time to talk was so good and such a change. I take away the kindness of my coach and the learning. I think everyone should get this coaching – thank you.” 

Read Coaching for Confidence…