From 2020 – early 2023, Forward Carers ran a small grants programme, as part of Birmingham Carers Hub, funded by Birmingham City Council, the Children’s Trust and Birmingham and Solihull CCG.
We funded 13 new specialist services for unpaid Carers in Birmingham to provide new support to meet the needs of Carers experiencing particular situations, from young Carers, to Carers supporting someone with a mental health condition and people who care for someone living with dementia. You can see the whole range of projects here, Carer Services – Birmingham Carers Hub
In this series of three blogs, we delve into the purpose, activities and impact of three of projects we funded – OSCAR Birmingham, Aquarius and Barefoot Birmingham. The information and quotes are taken from an independent evaluation by the Birmingham Voluntary Service Council (BVSC) who spoke to many Carers to learn about their experiences and the impact of the support they received.
Carers who shared their experiences as part of the evaluation described the stress of their caring role, and the huge burden it was for them. They were on duty 24/7, with no rest or time for themselves which felt exhausting and relentless. They had given up their ‘previous life’ and had little time for their own aspirations. They described a lack of support from statutory services, and that they were too busy to look for other support. They felt that it was not easy to find information about what was available for Carers. They also spoke of the enormous amount of love they had for the person they cared for. These services were designed to support and give back to Carers – when you’re the person people rely on, you need someone you can lean on too.
You can read about the impact of OSCAR Birmingham’s support on the lives of Carers and their families below:
Who is OSCAR Birmingham?
OSCAR Birmingham offers a Specialist Carer Support and Family Resilience service for Carers supporting someone, predominantly children and young people, living with Sickle Cell Disorder or the Thalassaemia condition. These are both inherited blood disorders affecting a person’s hemoglobin, which predominantly affects people from BAME communities. 90% of OSCAR’s workforce have lived experience of Sickle Cell Disorder (SCD) or Thalassaemia.
What was the project’s purpose?
It was important to OSCAR that Carers gained confidence in their caring role, interacted more with others and reduced loneliness. OSCAR, with support from Carers, designed services that helped get participants out of the house and that gave them respite, as well as valuable time with their families. The project also ensured that the needs of children and families were catered for. The funding from Forward Carers allowed OSCAR to provide activities and events for families without charge, so that the financial challenges that affect many Carers wouldn’t be a barrier to their participation.
Family support during the pandemic lockdowns
During covid lockdowns and the early pandemic, OSCAR staff made up care packages as many Carers and their families were shielding. They described: “We had a pantry going on in the office, and gave out baby milk and nappies. There were lots of new mums at that time. We had online fortnightly sessions – we had a coach who does our therapy who did a booklet for them to work through each week. Everyone was very eager to come to the office after lockdowns.” They also delivered first aid training and organised mental health awareness Zoom quizzes.
Family support post lockdown
When covid restrictions lifted, OSCAR organised days out for Carers and their families to spend time together doing something different, and connect with other families, including visits to Hatton World, bowling and strawberry picking. Providing activities for Carers to attend on their own was important for OSCAR too so they could experience the benefits of a brief period of respite from their role. The hydrotherapy pool proved to be a big favourite – a warm pool and a jacuzzi where Carers were able to have one and a half hours to themselves, without having to worry about anyone else. There was also a spa day, where Carers chose a treatment as well as having time in the pool. Other services OSCAR provides for Carers included coffee and chat events, information and advice, support with welfare entitlements and signposting to other services, and more.
Life as a Sickle Cell or Thalassemia Carer
Many parents describe the reality of supporting a child with SCD or thalassemia as being on constant alert, the risk of a ‘crisis’ episode (an acute attack of the condition) means that life as a Carer requires rigorous planning and organisation and the knowledge that plans may have to be changed at any point to manage the illness. And, as an inherited condition, many parents are caring for their children whilst suffering the effects of SCD or thalassemia themselves. Yet, there was widespread agreement that being a Carer has many blessing too, as one Carer described: “Even though it’s stressful and I have to over-plan, it’s given me a different outlook on life, and the values of life, and it’s given me the chance to meet a lot of people who are in my life who I really like and really care for who I wouldn’t have met otherwise. I’m grateful.”
The impact of support
Carers loved the fact that OSCAR offers a mix of activities for the whole family and those just for Carers, giving an opportunity for them to meet and mix with other parents and take time out from the caring role, which could often be quite isolating.
For those who had been part of OSCAR before the Carer specific project began, it has been of enormous benefit having others in the same situation around them.
“We didn’t have the carers group before, we only had the activities, we didn’t know each other. We’ve now created a group, we can get to know each other and talk separately to one of the mums. It’s made us more united. Whenever someone has a birthday, when child isn’t feeling well, we can send prayers – you can post a message.”
Other Carers described the joy of doing activities as a family:
“Even for my daughter being around other people with sickle cell, it’s nice for her to be with other people, and she wants to bring her sister to show off all her friends – they have done a lot of activities for us. It’s a good thing that there is someone there for me and my daughter, because it is stressful.”
Carers talked about the confidence they’d gained through OSCAR’s support and meeting with other families:
“Meeting new people, the other carers, has boosted my confidence. I couldn’t talk to anyone but now I can.”
As well as the emotional and family support offered to them, Carers really valued the practical input OSCAR provided because staff are very knowledgeable, and many have personal experience:
“The extra knowledge they have makes a huge difference.”
One Carer summarised her experience of OSCAR:
Before this project… I couldn’t go out, so it was just like, school, appointments, home, shopping, that’s all life was about. When this project started, I was so excited – my youngest child he wasn’t at school yet – and I was so excited just to be out with the other ladies and we went to a spa, we did hydrotherapy, and when we do that, we sleep like babies, stress goes down, we went to a farm, we went to the cinema, bowling, things we can’t do alone, so many things.”
We are incredibly grateful to OSCAR Birmingham for the huge impact they’ve had on Carers’ lives.
Contact details
If you would like support with any aspect of living with or supporting someone with SCD or Thalassemia, you can contact at www.OSCARbirmingham.org.uk/services-for-carers or via www.birminghamcarershub.org.uk
