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My Story: Bianca Cotterill

Pinpoint volunteer & parent representative

Mum to Holly, who has profound physical and mental disabilities 

Image of pinpoint volunteer

When Bianca Cotterill was told there were no supplies of breathable nappies for her growing, disabled daughter, she found it unbelievable.

“Holly had outgrown her nappies and all I wanted was the same thing but larger. But the school nurse said ‘no, it’s not possible’, the only kind available were plastic-backed ones, which were not suitable because Holly has heat-related seizures.  

“As an exhausted parent, you might be defeated by a can’t do attitude like this and if you are caring for a child with disabilities, you often don’t have the time or energy to battle on.  So you have to let go or just accept things that irritate you. But I just found this nappy situation ridiculous. It was an essential for my daughter and for lots of other families too.  I was determined not be fobbed off with something that wasn’t right. With pinpoint behind me, I felt it wasn’t the same mountain to climb so I just kept phoning and challenging.

“It took months and months of me badgering suppliers, deliverers and the continence service but in the end I got what we needed.”

Bianca’s battle helped forge pinpoint’s Continence Action Group, which brings together parents and users of the Cambridgeshire continence service with the managers who buy and provide the service. And a previous bad experience at Addenbrooke’s with Holly, now 18, was the springboard for the Hospital Passport document which many SEND families across the region now use and value.

Bianca is one of pinpoint’s amazing volunteers, who has helped us reach and inform SEND families across Cambridgeshire and work with them to improve services such as education, health and social care.  Her resolve and passion for getting things done has made a big difference to the lives of others.  And she feels volunteering for pinpoint has brought big positives in return.

Finding time to volunteer

“There are times when I can be quite busy with pinpoint and then others when I have no time to help at all.  But at Pinpoint, you’re not expected to be active all the time and you don’t have to go to meetings or campaign.  Even if you have just a couple of hours once a term, you can chat to parents or help make teas and coffees at pinpoint sessions – simple things that really make a difference and would really be valued.

“I have to dip in and out, depending on what’s going on in my life.  But I’m lucky that I can take three days of volunteering leave a year through my work and that gives me just enough time to attend the continence action group and partners in commissioning meetings as a parent rep.

The benefits:

“Pinpoint is such a valuable organisation. Along with my work, it’s helped give me a purpose, helped me continue to drive through my life and be acknowledged as an individual, with something to say - not just as a parent of a child with profound mental and physical disabilities. I feel as if I’ve been able to make some changes for the better not just for my daughter but for other families too.  

“Over the years, pinpoint has given me something to hang on to. It has provided me with that all important sense of belonging to something worthwhile.  When you raise a child with a disability, you desperately need to have some sense of normality.  It’s hard work, you’re tired and it’s easy to feel defeated or isolated because you can’t take your child to activities that other families go to. And because Holly has a unique disorder – she is the only recorded case in the world - there was no club to join. That’s why for me, continuing to work and volunteering has been so important. Without it, it would have been very easy to turn in on myself. 

“I’ve learned so much from other parents.  I’ve come away from every pinpoint session with something valuable.  Attending a pinpoint meeting is never a waste of time. You meet lots of other people with totally different backgrounds all caring for young people with individual needs.  You’re all fighting your own battles but want to make things better for other people in the future. We need to represent the children and young people in Cambridgeshire that cannot speak for themselves or fight for the services they need. 

A voice that’s heard

“Pinpoint has a crucial role in helping parents get their voices heard.  It’s important that we take the opportunity to go to these meetings and tell the people running the services about what life is like for our children and us. Meeting these professionals makes you realise that not only are they a friendly bunch, but that we are all striving for the same thing.   So much has changed between parents and services over the last 10 years. It’s not perfect - somethings are simply not possible due to lack of money and you can’t argue with that.  But we are definitely listened to. And making change, even small changes, feels very positive and worthwhile.”