I’m Kirstie and I am mum to Mirren who is five and Fraser who will be four this month. Fraser was diagnosed with cerebral palsy just before his first birthday.
Apply for Better Start
Better Start is open to children with cerebral palsy age 2-14, with places funded by National Lottery Community Fund available for those living in the Greater Glasgow and Clyde health board area. This includes families from: East Dunbartonshire, East Renfrewshire, Glasgow City, Inverclyde, Renfrewshire and West Dunbartonshire.
We will be able to see a number of children from other areas if they are a strong fit for the programme, with support from other funders.
The project is fully-funded by the National Lottery Community Fund and others funders, so is free for families taking part.
What is Better Start?
Children and their families will work with our team of specialist therapists over the course of a number of sessions.
Therapists will support each child and their family to solve everyday problems – daily activities or things the child might find challenging because of their cerebral palsy.
Sessions will be personalised and tailored to suit each child’s individual needs, and those of the wider family and support network.
The aim is to ensure each child participating in Better Start becomes better connected and confident within their own family and school community, and feel more able to take control of their lives.
Sessions will also support families to help them know how best to support and enable their child to achieve to the best of their ability.
How can I apply for a place on Better Start?
Please get in touch to find out how you can get involved. Contact us on info@cpscot.org.uk or call 0141 352 5000.
A passion for dance: interview with Eilidh McGrath
Cerebral Palsy Scotland volunteer Bernie Hunter interviews Eilidh Elizabeth Molly McGrath about society’s attitudes to disability and her passion for dance.
In recent weeks, I interviewed a young lady called Eilidh. Our paths have crossed as we both are part of a music and dance organisation – Paragon Music. I was really interested to find out more about Eilidh, her disability and challenges.
Eilidh has cerebral palsy which affects her mobility and speech. She has a number of different ways to communicate with people including using her own voice to say a couple of words, iPad technology, a laminated sheet with letters on it to enable her to spell out the word using her eyes, BSL and homemade sign language that her and her mum created. Eilidh uses a manual wheelchair to get about, she is able to self-propel for a short distance but as her right hand is slightly weaker than the left, she requires assistance to get about when outside.
I wanted to hear Eilidh’s thoughts on how society acts around disability- she explains that she feels that a lot of strangers still talk to her like she is a 2-year-old which is totally wrong. On the plus side, Eilidh does notice people speaking to her in a normal way and that is a big win. Another point that Eilidh made is that she finds young children staring at her and wants parents/guardians to seriously educate their kids about how to be when they see someone with a disability, and social skills come into this too.
As I said at the start of this blog, Eilidh attends a music and dance organisation. Paragon aims to make the arts accessible for everyone. 6 years ago, Eilidh came across the organisation- it was the Paragon M3 week at the Tramway, in Glasgow. The summer programme aims to reach out to young people who have additional support needs for the opportunity to learn music and dance. As soon as Eilidh got started at M3, she caught the dance bug and fell in love with the arts.
Having discovered a real passion for dance, Eilidh wanted to study Higher Dance at school. In 2019, she contacted the SQA (Scottish Qualifications Authority) to ask how she could do the course as she has cerebral palsy. They requested Eilidh to send in a video of her dancing and that is exactly what was done. Unfairly, from the video alone the SQA decided that Eilidh would never pass the dance course and the reason was that they couldn’t mark her posture, musically or focus. Eilidh was really upset about this, the fact that they never even gave her the chance to try the course.
Eilidh is an intelligent woman that doesn’t let her disability hold her back in life. She has many skills including speaking in different languages and enjoys dancing with Paragon. Dance was the main activity that Eilidh missed during the Covid-19 lockdown, it was a long 18 months but thankfully the M3 programme was able to continue online. But this way of working came with challenges too. Eilidh had to work with one of the Paragon mentors so they could assist her to communicate, as using an iPad wasn’t always possible when Eilidh was dancing.
Thank you to Eilidh for participating in this blog, I will leave you with this quote from the lady herself – “I may not go places on foot but that doesn’t mean I don’t go places!”
Milly MacKinnon | Centre Manager
Milly had a successful 30 year career in IT, delivering and implementing projects for many companies including Capita and NHS Education Scotland.
In 2019, Milly moved to the charity sector as the operations manager for the Renfrewshire Foodbank, playing a key role in operations during the Covid-19 lockdown, ensuring services continued to run for the most vulnerable.
Joining Cerebral Palsy Scotland as the Centre Manager in September 2021. Milly looks after the day to day running of the centre, managing the administration team and providing support to the CEO.
In her spare time, Milly is very active with Girlguiding in Paisley having been a volunteer for over 20 years, running rainbow, brownie, guide and ranger units.
We issue our Annual Review with a call to give people with cerebral palsy support and services
On World Cerebral Palsy Day, Cerebral Palsy Scotland has issued their Annual Review with a call for an urgent plan to #StampOutTheGap and give everyone with cerebral palsy in Scotland the help, support and services they need.
The Scottish Government, Scottish Parliament, NHS Scotland and our Local Authorities should listen to the voices of those with cerebral palsy and their families and understand that seeing people with cerebral palsy in person is an essential service.
Read Cerebral Palsy Scotland Annual Review 2021
Chief Executive of Cerebral Palsy Scotland, Stephanie Fraser said:
“I have enormous admiration for all the team at Cerebral Palsy Scotland and those in the front line of the NHS who strive day and daily to be there for those who need support.
“But, for those with cerebral palsy, the system is simply not good enough and our survey work has vividly shown just how hard the pandemic has hit them.
“60% of people with cerebral palsy say their mental health has been negatively affected. Decline in wellbeing was not restricted to the person with cerebral palsy but 44% felt that it had also impacted on other people in the family. 43% of people are reporting that their physical health continues to deteriorate. 63% reported that their care arrangements had still not returned to pre-Covid levels.
“At a time when those living with cerebral palsy and their families needed greater help than ever before, too many people were given less assistance, not more. We have done all we can to be there for those who need us but the backup that they, we, and healthcare professionals need has been conspicuous by its absence.
“Children with cerebral palsy shouldn’t be routinely left with home schooling without help – they need in person support tailored to meet their needs, and adults in chronic pain need bespoke in person advice.
“For some, services have not been available at all. In many cases, people have felt completely abandoned and in crisis with families and adults under huge pressure.
“And there is a gaping hole in how we treat people with cerebral palsy here in Scotland. Our children do get some help and support but as soon as they reach adulthood they are left in limbo by the system. We at Cerebral Palsy Scotland do all we can to bridge that gap, but our health and social services need to do better.
“Scotland is a first world country. We don’t have to put up with a second rate service. It is time to #StampOutTheGap.
“Scotland must do more and we must do better. We need to get back to seeing more people in person.
“And we must go further. NICE guidelines for adults with cerebral palsy already exist in the rest of the UK. They include the goal that everyone with cerebral palsy should be able to access a review by a cerebral palsy specialist at least once a year. However, there is no plan for how these guidelines will be implemented.
“So we ask that guidelines are adopted and implemented here in Scotland and Cerebral Palsy Scotland stands ready to help make this a reality.
“If we can get this right, the benefits are enormous: more people living more active lives and making a bigger contribution to their communities and country.
“But put even more simply, it is the right thing to do in a caring society.”