S – Scope

I was diagnosed as having Cerebral Palsy (CP) when I was nine months old and this was when my affiliation with the charity Scope began, with my parents seeking help and advice. Through this seeking, Mum & Dad learnt about the Spastic Centre which was in Watford – about eight miles down the road from where we live. I have known people to cringe when I tell them that I went to a Spastic centre but the National Spastics Society was the name of the charity and it wasn’t until 1994 that it changed its name to Scope. Given that I was born way back in 1979 I was very much involved before the renaming came about. Along with the name change, Scope went from a charity specialising in Cerebral Palsy to a pan disability charity. I am not the only person who would have liked it to have remained a charity, specifically for people with Cerebral Palsy, but thankfully they have formed a CP network – more on this later!

Although the charity has always been in the background of my life, this post will explain the support which the National Spastics Society and later Scope, gave me in the early years of my life, 1980 – 1984 and then how I have become involved with it again from the year 2020.

As Mum and I are very organised, in terms of keeping records, I can tell you that I started attending the Spastic Centre in May 1980 and left in August 1984. The focus at the centre was therapy and medical input so during my time there, surgery on my hips was recommended by the doctors which helped to ensure that I would not be in wheelchair.

I remember Mum saying how strict they were and we only had weekends and Bank Holidays ‘off’. It was also frowned on if we ever dared to be late something which Mum occasionally struggled with as she also had my 4yr old brother to get to nursery/school. In the school holidays my poor brother had to still get up early, as he was too young to be left at home.

Mum not only had to drive me there in the mornings and pick me up in the evenings but if I had an important therapy session or I was being seen by the centre’s doctor Mum would also drive over for that particular appointment. Mum has often said that the felt she could do the 8-mile journey in her sleep, as she did it so much! It was undoubtedly worth it though as I was given intensive physio and speech therapy, standing me in good stead for later life. To give you an idea of how hard they worked with me, it is suffice to say that I was born right-handed and by the time I left I was left-handed. I think allowing me to remain right-handed would have been better but in the grand scheme of things this is very minor. Dad was also very involved in fundraising and used to do sponsor walks raising money for the charity which was helping his daughter so much.

Having been in this ‘bubble’ for so long probably meant that going to mainstream school was even scarier, for my parents and I but this is something which I wouldn’t have changed. Trying to fit into mainstream society was very very important to me hence my close affiliation with the Spastics Society came to an end. It wasn’t until I entered the world of work and developed a passion for working in the field of disability awareness that Scope became a little bit more prominent in my life. I registered on their employment scheme and I even went for a paid job, with them, which I was offered. Thankfully, Mum and Dad made me realise that trying to commute to Scope’s offices in London everyday was impractical so much to my then disappointment, I turned the job down. Something which I really did not like doing but, as usual, Mum and Dad’s advice was spot on, the commute would have been too much. I also had a connection with Scope in 2000 when I successfully applied to them for a Millenium Award meaning that I was able to launch my disability awareness project, ‘Be Aware Be Clear.’  Around this time, I also did some voluntary work with the Community Fieldworker who worked for Scope and she invited me to do a couple of talks with her – we made a great double act!

Lock down was when my next major link to Scope came about. I remember receiving an email to say that they were trying to establish a Cerebral Palsy (CP) network online I therefore decided to join and have remained a member ever since. I find the meetings very valuable indeed and they have become a permanent fixture in my diary. We meet every 2^nd Wednesday of the month on Zoom and have guest speakers or discussions amongst ourselves about any area of CP. 95% of the members have Cerebral Palsy themselves but we also have people who are parents of someone with CP. Like everything, some months are more useful than others but I often come away with little nuggets of advice. The biggest help was when I learnt about some NICE Guidelines recommending that adults have an annual check-up with spasticity clinics, which have now been set up around the country. Other members of the network were really pleased that this service was available so although going to hospital appointments is not my favourite thing to do, I thought I just need to put my worries behind me and ‘go for it’.  Unlike most people, I seem to cope better with medical appointments on my own, but aware that my speech may be a problem and also wanting to make sure I remembered to cover the main points, I jotted down some notes which I thought would help the consultant get to know a brief history of my life so far. I then decided to write a ‘Wish List.’ Although there was nothing major of my list, there has always been bits of my Cerebral Palsy which have niggled me.

The appointment was SO good! At the appointment there was a Consultant Neurologist, a Physiotherapist and a Clinical Nurse Specialist. All my preparation paid off and at the beginning of the appointment I ended up giving my notes to the consultant, rather than keeping them as a backup for my speech. The consultant went through my notes point by point which really helped to get the full benefit of the hour appointment which I was so fortunate to have. I did not think for one minute there would be any magic pills which I could take to eradicate all my niggles, and I was right. However, what the appointment did give me was time to discuss issues which I knew my GP probably would never be able to advise me on. As a result of these discussions, I came away with a better understanding of my Cerebral Palsy, even learning that I have dystonia – a type of CP which I wasn’t even aware of! As a result of that appointment I have had two follow up appointments with them, at Queens Square, London with another one booked for next month, I have also been able to access excellent support from my local neuro-physio team – including the long term loan of a standing frame. By using the standing frame, daily, it is hoped to provide some relief for my neck, a relatively new problem which I have, as well as helping to improve my posture.

I am therefore so grateful to the CP network for letting me know about the clinic in London. As I am slowly getting older I am feeling that things are becoming more difficult so being able to untap this additional support has come at just the right time. I would recommend anyone who has Cerebral Palsy and is not a member of the network and or has not attends a spasticity clinic that they consider doing both things as both things have been hugely beneficial to me.

 I can see myself being a member of the CP network for years to come, so although I have been involved in Scope intermittently through my life I think it is here to stay, this time!  

Footnote: (To become a member of the network, please email  networkcp@scope.org.uk)