Small Charities Week – Camtrust and The Cambridge Rare Disease Network

It’s the start of Small Charities Week (18th – 23rd June 2018) which specifically highlights the work of small but vital community based organisations across the UK.

We are doing the same here at Support Cambridgeshire (albeit with a distinctly Cambridgeshire flavour) and the first two organisations being profiled are Camtrust (For lives less ordinary) and The Cambridge Rare Disease Network (Valuing- Celebrating- Supporting).

Please note that throughout this article Support Cambridgeshire will be adding some commentary to these profiles. These comments will be italicised to ensure both clarity and ownership.

Lets start with Camtrust.

Camtrust is a Cambridge charity providing specialist training and education for adults with learning difficulties and physical disabilities. They offer programmes in employability and independent living, and provide work experience in the local Cambridgeshire community. They encourage social interaction, building on client confidence and well-being in an inclusive and supportive environment.

So how did they start?

Camtrust began life in 1993 (the same year that Dyson sold its first ever bagless vaccum cleaner and Whitney Houston topped the charts with I will always love you for those who are interested).

The main objective of Camtrust is to offer training for adults with learning disabilities. They give clients better opportunities when it comes to living independently and gaining employment, whether this is paid or voluntary. Their clients and users are aged 18 and over and their courses are open to all.

Camtrust is like most small but vital organisations that service local Cambridgeshire communities – its unique. The programme is undertaken within a commercial print and design environment, and provides a happy and relaxed atmosphere where the clients can make friends and develop many skills.

What are their main challenges?

Like most community based organisations, Camtrust are always looking for volunteers and have a variety of roles available. For more information click here:

Funding is always a pressing issue for smaller organisations (and is likely to be a recurring theme throughout this series) and is particularly acute at present given public sector restraint.

If you wish to donate to Camtrust or provide support please click here:

What are people saying about them?

Camtrust is the place where you can achieve if you believe. If you wish on a star then you will go far. I feel I can be myself at Camtrust. I love going to the community café whilst at Camtrust: it gives me great experience with members of the public serving teas, coffees, cakes, toasted sandwiches and soups. I get to go singing at Bramley Court fortnightly and I like going shopping with Steve for ingredients for lunch club. Everyone is really friendly.

Martin (15/01/ 2018).

I like coming to Camtrust because I like to go singing on Mondays at Bramley Court and working on the computer. On Thursday we have lunch club which I especially enjoy, along with all the other activities with my friends.

Paul (15/01/ 2018).

I enjoy coming to Camtrust because I can spend time with my friends. I also enjoy working on my computer skills, helping Len fix the bikes and on Thursdays we cook our own lunch.

Michael (15/01/2018).

Lets move onto the Cambridge Rare Disease Network.

The Network is a newly established Charity working to build a regional community of people in Cambridgeshire to address the unmet needs of rare disease patients, their families and the professionals who work with them. They do this through community activities, awareness raising events and closer collaborations with scientists and researchers in the development of new treatments. The Network gives patients and carers a united regional voice to help develop user-led services.

One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone. Most of these diseases manifest in early childhood and many are life-limiting conditions.

Currently no regional community groups exist for rare diseases, individually their unmet needs are seen in isolation, collectively patient and their families can form a powerful regional voice influencing service delivery at every level and ensuring their collective needs are met. The Cambridgeshire pilot has the potential to become a model for many other regions across the UK.

What are their main challenges?

The Network’s challenge is to create a climate that fosters innovations in health, education and social care by providing widespread community events and activities and stimulating interest and awareness in the unmet therapeutic and support needs of those still without treatments and cures. Their ambition is to bring rare disease into the mainstream and push the many issues faced by our community further up the political and social agenda. Their rare community faces an average of 6 years to diagnosis, only 5% of rare conditions have a treatment, 75% of those with rare disease are children and 50% of these die before they reach 5 years of age. They strive for quicker diagnosis, more treatments and cures, the best support in education and health and a reduction in isolation and related mental health issues.

What are people saying about them?

The Network runs an activity group for children and their families living with rare disease. One of their parents said “all children need is a little help, a little hope and people who believe in them and beautiful things can happen. Unique Feet had definitely provided this for us.

A delegate at their 2017 summit said “Brilliant to see all approaches working together. patients, families, clinicians, pharmaceuticals. A relief to find a community who understands the issues of being rare. It was like coming in from the cold, scary wilderness”

Support Cambridgeshire Commentary:

Camtrust:

According to Government Statistics on Learning and Physical difficulties there are over 11 million people with a limiting long term illness, impairment or disability.

1.2 million people are deemed to have a learning disability. The most commonly-reported impairments are those that affect mobility, lifting or carrying. 

The prevalence of disability rises with age. Around 6% of children are disabled, compared to 16% of working age adults and 45% of adults over State Pension age. 

A substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled.

So in this context Camtrust undertake a pivotal role: Giving people the confidence and ability to take part in civil society and feel both empowered and valued is vital.

The Cambridge Rare Disease Network:

Another worthy addition to Small Charities Week. There are in excess of 6,000 rare diseases, but those who have them often wait years for a diagnosis and can find very little peer network support as they simply do not know anyone else who suffers from the same condition. A Network which brings practitioners, carers and patients together is crucial. Established in 2015, lets hope that the Cambridge Rare Disease Network grows and develops into the future.    

 

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