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My move into supportive accommodation

Cerebral Palsy Scotland volunteer Marion

This blog from Marion is about her experience with moving into supportive accommodation and some of the changes and challenges she has had to face in the process.

Hello everyone again. This blog which you are about to read will be about my experience with moving into supportive accommodation. I will also talk a bit about my previous houses, as well as the huge change I needed to make to my life.

I first moved into my own flat in 2008, and at the time I was supported for most of the week including overnights. I became an advocacy worker and  worked regularly in an office, which I loved. I had a great team of support workers and some are still great friends. Over time I moved to another house at the other side of Paisley. I got support but unfortunately I did not get full support while I was there but it was still nice to have a bit of independence. I also became a volunteer at Cerebral Palsy Scotland.

All my life, my parents and I always promoted my independence since attending the Bobath Centre in London from the age of one. “She does the work, not you”, I can still hear my dad saying!

In 2020, before the pandemic, my Social Work Department offered me the chance of moving into supportive accommodation. I wasn’t that keen on the idea but I knew for the future that was the best option for me. I got the keys to my new flat finally in the August.

During the lock-down period I had many zoom meetings to set up my service with my service provider. I finally got my team of support workers this March after months of interviews.

In May I moved in. For the first time in my life I was on my own at night. I can get support if I need it from an on-site core team. It is still hard to get used to.

It has not been that easy for me to deal with all the changes I needed to make to my life, like using a hoist instead of a stand aid because of my service provider’s rules.

Another change is, I can’t sit on my sofa every night. That means I’m in my wheelchair for nearly 15 hours a day.

Being brought up one way, e.g. therapy, doing what I want without thinking about how I can get to the toilet when I am out, and also being able to stand many times a day, I now need to adjust to another way.  I need to use a hoist, so I feel my world has become more limited. That is what I’m struggling with big time.

I feel like I need to make the best I can out of the situation that I find myself in. My advice to people who find themselves in a similar situation is, you have to be patient and keep going.

Even if you are worried you have to give it a good try and you may be amazed by what you can do.

Tags: accommodation, blog, Cerebral Palsy, supportive accommodation

Using my toe to type

Image of Barry smiling at the camera

In this blog, Barry talks about the skills he has developed to allow him to type and use a computer.

Hi, it is Barry Smith or Baz as I like to be called by my friends. As you all know I have cerebral palsy, but it doesn’t stop me from writing on my computer.

Image of Barry using his foot to typeBut I don’t use my hands. I have a big keyboard with an overlay on top of it. Down to my hands is very jumping which comes off of my CP, I type with my big toe. Then down to me can’t work a mouse, I use a jelly skill and work it with my foot.

I started using my big toe do things when I was 6 years old, like working the video. When I was 19 years old I got roll ball I move it with my toe.

In 2013 when I was doing a computing course at my local college, a boy looked in my classroom. One of the staff asked him what he were doing, thinking he was up to no good. He told her, I can’t get over him using his toe!

I use my skills to communicate to people what I want in my life. How I feel about having CP – if my hands can’t do something and my big toe or foot can, then I use them. My legs might can’t walk, but this won’t stop me.

Tags: blog, Cerebral Palsy, Communication

Using a communication aid – Barry’s experience

Image of Barry smiling at the camera

My name is Barry Smith and I am 42 years old. I am from Scotland and I have cerebral palsy.

Down to this I use a power wheelchair and I speak with a Lightwriter too, but this don’t stop me making the most of my life. 

Before I go on with this I am going tell you how I write this up, down to my hands is too jumpy to type. I use my toe to type this up, which is a skill too.

When I was about 23 years old I lived in Red Cross in Irvine. When I started there I was a part of the Gateway project which was for 16 to 26 year olds to show us new skills. One of the best things I got out of the project I was able go on a course call Part and Polly making with the Gateway. One of the things I got from doing the course I was told no matter what you are able to do anybody got a skill even just a happy face.

How my communication aid helps me

In 2006 I made my goal which was to get my own home what I am still in today. I don’t think I would be able to this without my Lightwriter.

Then two years later I did a talk about my life at Communication Matters Conference which I loved on my SL35. When I was down at the conference I saw the SL40 what was the new Lightwriter which was just coming out. What I remember I got to try this – what I loved about this you were able to text on it so I send the first text in my life to my Mum. She couldn’t believe it was from me, because she knew I couldn’t send texts down to my hands. My Mum phone the person who I was with, and he told it were from me on a new aid.

A few months later Ayrshire got me one. Once again I text my Mum and it felt like Christmas. In 2011 I got SL40+ – that mean I could phone people on it and they could call me on. Then I started doing little project in Scotland for the Right to Speak what I loved do for them. In 2012 I help with a green paper for government. 

What I do not like being a communication aid user

When I was using the Connect Lightwriter as you know people could telephone with this. A few times I trying to make a business call. When the person answers and I said who I was and I told them I am using a communication aid to telephone them. The person who I were talking to told me they were sorry I needed to end this call, down to you aren’t using your own voice under the data act. When I put the telephone down I felt disabled and so mad. I feel my communication aid were stopping me in my life. Now I think people should know about this. 

Tags: Cerebral Palsy

COVID 19 Pandemic: Life as a hospital doctor with CP

Kirsty Colquhoun picture

Kirsty Colquhoun is a consultant geriatrician and has CP. Her blog looks at life working in a COVID ward during the pandemic, the impact of working through the crisis, asking for expert support when needed, and why #StampOutThe Gap matters to her.

The first patient I successfully discharged home from my COVID ward was an older lady with Cerebral Palsy, we were all delighted when she got home, as we were for all our patients. 

I work as a consultant geriatrician in Glasgow.  This means that I look after older adults, particularly those who are frailer.  COVID, for the group of patients I care for has been catastrophic.  Age is the biggest risk factor for having a poor outcome if you contract COVID.  I have spent the past 8 months working in older adult COVID wards.  At one point, Older Peoples Services, Glasgow Royal Infirmary, where I work, was looking after 10% of Scotland’s COVID inpatients.

This year has been exhausting and brutal, physically and emotionally, but whatever I have felt has never been as bad as what my patients and their loved ones have gone through.  There has been tragic stories like people losing both of their parents within days of each other, that is heart-breaking to witness, and I will never forget those patients and their families.  Most of the patients who I look after, would not survive an intensive care admission, however, we still deliver the highest possible care we can give, tailoring it to the needs of that patient.  The first patient I successfully discharged home from my COVID ward was an older lady with Cerebral Palsy, we were all delighted when she got home, as we were for all our patients.

Kirsty Colquhoun pictureHowever, it is not all doom and gloom in the NHS.  While there can always be things you look back on and think you could have done differently, everyone working has pulled together like never before and tried their absolute best.  This time last year we had no known treatment for COVID – now we have several.  The scientists have worked extraordinarily hard.  I was lucky enough to have the opportunity to enrol in the Oxford vaccine trial last June (and as I subsequently found out in January – lucky to have been in the COVID vaccine group).  Just 6 months on that vaccine was being rolled out to give us a route out of this pandemic, which is amazing.  We have tried to continue as much of our other non-COVID work as possible.  For example in the work I do with older cancer patients we have been using virtual means.  COVID has given us an opportunity to change the way we work and some of that may be for the better.

Sadly COVID has supercharged already pre-existing inequalities.  You are more likely to die of COVID if you live in a deprived area.  For some there is a view that if you are older, have a disability or a chronic health condition you are somehow less valuable.  That is wrong and we must push back against that mind-set. I would fall into the category of having a disability, it seems to surprise some that someone with a disability could work (more than full time) as a consultant, particularly work in COVID wards.  But why, disabled people are working in all areas of society, just like everyone else.  I can assure you my life is no less valuable than the next persons, nor those of any disabled person.  During the pandemic there has been a focus on wellbeing and kindness.  Let us come out of this a fairer society and do our upmost to tackle these inequalities.  As this pandemic has shown, no one knows what the next day holds or who could acquire a disability or chronic health problem.

When we are out the other side of this we will all need time to recover.  For some it will be from the grief of losing loved ones, for others it will from financial hardships, for some it will be from the exhaustion and emotional toll of trying to balance working from home with home schooling and for many it will be the from the emotional strain of the past year!  A surprise challenge for me has been the physical impact the pandemic has had on my cerebral palsy.

I normally carefully balance long working hours with a mix of marathon outdoor swimming (I hoped my swimmers lungs would stand me in good stead if I caught COVID on the wards), Pilates and weights.  But all that disappeared.  I was standing longer at work, sitting longer at home and doing less of the things that keep me on my feet.  By last month I was in much more pain than usual and my function had deteriorated to a level I cannot recall as an adult.  It is at that point that you realise there is really no services easily available for adults with Cerebral Palsy except if you go to the private sector or the charity sector.  I have to admit I was scared, scared that this was my new normal, and that the independence and career I had worked so hard to achieve was changing.

I have privately had to see a musculoskeletal physio, who has been a great help.  However, I have had my first session with Cerebral Palsy Scotland.  I have had a full top to toe MOT by a Cerebral Palsy Specialist Physio.  Everything from the way I sleep to the way I stand has been looked at.  I know I will not only come out the other side of this as I was but have the opportunity to come out better. This is why the #StampOutTheGap campaign is so important.  People with Cerebral Palsy need and deserve the same access to specialist services as anyone else would who have a health condition or disability.

I realise I am lucky, throughout the pandemic, I have been able to come into work and do a job that I love and no matter how bad things have felt it is always a privilege to do that job and I would never want to do anything else.  I have had the support and kindness of the most amazing colleagues and that human contact is something so many people have not had this year.

I work in a Department with some exceptionally inspiring people, the first female president of the Royal College of Physicians and Surgeons, the current President of the British Geriatric Society.  Excellence is expected, disability or not, and that is what I want and strive for.  But just as important is the ethos of kindness, support and wellbeing.  I am being given the time and support to get better and I wish I could bottle the inclusivity that I experience for others.  The day I had to take some time off, my COVID ward became a non-COVID ward as cases drop.  I am glad I made it through to that point.  I look forward to returning in a couple of weeks, I am sure better and hopefully in brighter times.

Kirsty Colquhoun: Consultant Geriatrician in NHS Greater Glasgow and Clyde, Subdean Glasgow University Medical School for Glasgow Royal Infirmary, Fellow of the Royal College of Physicians and Surgeons – Physician Representative of the Inclusion Advisory Board, Secretary for the British Geriatric Society Oncogeriatric Specialist Interest Group, Trustee CP Scotland.  Has Cerebral Palsy, Diplegia.

Tags: Cerebral Palsy, covid-19, Physiotherapy

Better Start – National Lottery Award

Child playing

We are delighted to announce that Cerebral Palsy Scotland has received a National Lottery award from The National Lottery Community Fund over three years to launch the Better Start programme.

Chief Executive of Cerebral Palsy Scotland, Stephanie Fraser, said:

In Cerebral Palsy Awareness Month, it is wonderful to be able to share this good news for children with CP and their families. Better Start  will walk beside families who have a child with CP to help them  know how best to help their child and enable children to take part, contribute and achieve what they want to achieve. Life with CP isn’t straightforward and we are grateful to be able to provide expert help to families which is made possible thanks to National Lottery players.

National Lottery Community Fund Logo

The new programme will launch in April, and if you have a child or support a child with CP aged 2 – 14 years in the Greater Glasgow and Clyde health board area, please get in touch to find out how you can get involved.

Better Start will support you and your family to solve everyday problems to ensure children with CP are better connected and confident within their own family and school community, and are better able to take control over their lives.

The National Lottery Community Fund, Scotland Chair, Kate Still, said:

In these uncertain times our priority is to ensure that National Lottery money continues to flow to charities, voluntary sector organisations and grassroots groups.  I would like to congratulate Cerebral Palsy Scotland on their award, theirs is an important project and will support people now and in the future when they can physically come back together to make great things happen in their community.

If you would like to find out more about Better Start, please contact us on info@cpscot.org.uk  or call 0141 352 5000.

You find out more about the The National Lottery Community Fund awards here.

Tags: Cerebral Palsy, Support for Children

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