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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

Stamp out the gap on health services for adults with CP

  • Campaigning
  • The impact of covid
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  • Stamp out the gap
  • Counting people with CP
  • National alliances
  • World CP day
  • Campaigning
  • The impact of covid
  • Support for adults
  • Stamp out the gap
  • Counting people with CP
  • National alliances
  • World CP day
Stamp Out the Campaign mock stamps

We are supporting the new campaign calling for the 130,000 UK adults living with cerebral palsy to stop being treated like ‘second class citizens’ due to inequality in healthcare provision.

Led by the charity Adult CP Hub, the Stamp Out the Gap campaign will run throughout March – Cerebral Palsy Awareness month – and aims to raise awareness of the need for care parity for adults with CP.

Six personalities – all of whom have CP – are supporting the campaign, including comedians Rosie Jones and ‘Lost Voice Guy’ Lee Ridley. Their faces feature on a specially designed set of mock ‘Second Class Stamps’, which highlight the need to stamp out the gap in healthcare provision.

Emma Livingstone, co-founder of Adult Cerebral Palsy Hub, explains:

“Adults with CP are treated like second class citizens when it comes to healthcare. We do not get joined-up healthcare like other adults with life-long conditions and there are no clear care pathways. At the age of 18, we are basically just told to ‘get on with it’. NICE guidelines have been developed recommending this is changed to provide joined-up healthcare with dedicated CP specialists, which is what happens for other long-term conditions. However, the guidelines have yet to be adopted across the NHS. Our campaign aims to ‘stamp out’ this gap.”

Although NICE guidelines have been developed for England, Wales and, effectively, Northern Ireland, the government has yet to adopt them across the NHS. In Scotland, no SIGN guidelines (equivalent to the NICE guidelines) even exist for adults with CP – an even further inequality in care parity.

Cerebral Palsy Scotland previously inputted into and supported the development of the NICE guidelines. Chief Executive of Cerebral Palsy Scotland, Baroness Stephanie Fraser of Craigmaddie, said:

“The answers to closing this gap already exist. There is absolutely no reason not to adopt the NICE guidelines and there is also no reason not to adapt those to SIGN guidelines for Scotland and adopt them.”

The campaign has launched an online petition calling for Care Parity for CP, asking for:

  • specialist services for adults with CP,
  • adoption of the NICE guidelines and quality standards universally across all the NHS services.

Emma Livingstone of Adult CP Hub commented on the huge impact these changes could make for people with CP and the UK as a whole:

“This change will deliver a huge impact for adults living with CP and for the NHS and the economy. We believe an investment of £20mn into joined up healthcare for adults with CP could give £422mn back to the economy in gross employment benefits. At a time when the healthcare system and economy is under unprecedented pressure, this actually offers a way to save money.”

By World Cerebral Palsy Day on 6th October, the charity hopes to have 100,000 signatures so the issue can be discussed in Parliament.

How you can support the Stamp Out the Gap campaign:

  • Sign the online petition

  • Make some NOISE and raise awareness on social media! – We want the government to hear about this. Let your friends know about the lack of care parity for adults with cerebral palsy. Ask them to sign the online petition and share your own experiences of the gap in healthcare provision for adults using the hashtag #StampOutTheGap

The mock stamps for the campaign were designed by orthoptist and illustrator Eve Lacey, who herself has cerebral palsy. The six personalities featured are: comedian Rosie Jones, comedian Francesca Martinez, actor James Moore, Britain’s Got Talent winner ‘Lost Voice Guy’ Lee Ridley, Paralympian David Smith MBE and para-Dressage rider Tegan Vincent-Cooke.

Adding her voice to the campaign, Rosie Jones, said: “I’m shocked and concerned at the gap in healthcare for people CP versus other life-long conditions. It is discrimination versus other conditions, and we must change this.”

Paralympian David Smith MBE added: “Providing joined-up healthcare means a chance for people to live healthier, happier lives, with less strain on the NHS and more opportunity to stay in employment. It doesn’t make sense to not adopt the NICE guidelines.”

You can find out more about the campaign at Adult CP Hub.

Getting my Covid-19 vaccine

Cerebral Palsy Scotland volunteer Marion

In this blog, Marion talks about her experience of getting her first Covid-19 vaccination.

Hello everyone, I hope you are coping ok in this lock-down and keeping well. As much as I hated being stuck in from last March until July 31, as I was on the shielding list when most of my friends with cerebral palsy weren’t, now I have changed my mind as it meant I was in category 4 for the vaccine. I was called by my GP to attend a Saturday clinic for the vaccine for COVID-19.

I was glad to hear my appointment was at my doctor’s surgery rather than one of these massive centres which are always shown on TV of people getting their vaccines. Somehow that looks as if it would be a lot for someone who has a disability, but I’m sure they have thought it out.

I was jumping in to my doctors on Saturday as today would be a step forward to some kind of normality. Well, I hope that – you just never know what will happen next in this pandemic.

So, I went into the doctor’s room myself, leaving my mum in the waiting-room.  Firstly, she asked me questions e.g. have you had the virus in the last six months, and when did you have your flu jag? After that she gave me the vaccine – it was sorer than I was expecting but it was over in a flash. I think you are better to get the jag on your better side – it doesn’t seem to be too painful if you can move your arm about.

I got the Oxford-AstraZeneca vaccine. They tell you what kind you are getting.

When I came out to the waiting room I felt very pleased that I have had the vaccine and I was like that all day. Unfortunately I took some side-effects the next day, being sick and having a sore arm. Now, although I will get my next vaccine, likely in 3 months, I will be very aware of how it might affect me afterwards.

I would recommend anyone to get the vaccine even with knowing you might get ill for a couple of days, and they just say it only lasts 48 hours. It is nothing like getting COVID-19.

I hope this blog will make you at ease getting yours.

Good luck and hopefully we can do more things in life soon once this vaccine drive gets to more of us.

Additional comment from Kirsty on getting vaccinated at QEUH,Glasgow:

“If you go to Queen Elizabeth University Hospital to get vaccinated, they have wheelchairs and someone will help push you. They will wait to take you back to the front door to get your frame, if you have a frame. They have on PPE.”

You can also read our Covid vaccines and cerebral palsy webpage, which gives general information on the vaccine roll-out for people with CP, their families and paid carers.

Tags: coronavirus, covid-19, vaccination, vaccine

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

Bernie: Lockdown life

Our world has been a very different place for almost a year now due to the pandemic. In my latest blog, I am going to talk about what has kept me busy and focused throughout what has been a challenging time.

Let’s turn the clock back to last February when life was normal, I was out at my voluntary jobs twice a week while enjoying a social day too. Unfortunately, I had to take some time out due to my support worker leaving and there was nobody to step in. This was only supposed to be for a short time but it ended up being 5 weeks then the first lockdown happened so basically, I have been staying at home for a full year.

I have only been out of my house a handful of times since last March, mostly when the restrictions started to ease in the summer- getting to go for a couple of cycles was a dream but then the virus was starting to spread again and I didn’t want to take any chances so I stopped going out. It is crazy to think that I have spent the past year in the house as I am so busy- there still isn’t enough hours in the day for me!

Art has been the main thing that has kept me focused during lockdown- I have recently completed my latest collage of ‘The Wee Rainbow’ which is to show my appreciation for the NHS. I love chatting to people so a couple of months ago, I started an activity called ‘Blether with Bernie’ on my social media as I wanted to check in with people…it is so important that we connect during these times. On Christmas day, I decided to do a mini version to support people who spent the day alone.

The feeling of missing people is really starting to kick in now, zoom calls have been brilliant and I really don’t know how we would have coped without technology but it isn’t quite the same as seeing your family and friends in person. I have days where I get emotional for no reason, it just happens…remember it is okay to have off days. I try to stay positive as there are so many people facing heartbreak and my thoughts are with them all.

Online entertainment is my way of taking a break from everything – sometimes we just need a distraction. I really enjoy watching my friend Ross interview celebrities live on his website: The Ross Owen Show – such great guests…always get a laugh and I’m still loving tuning into WestWay Radio on Saturdays at 8pm as my friend Tom Urie presents his show ‘Club Tropicana’ with the best banter and songs.

This journey is still rocky and we are still not sure of when the pandemic will end but with the vaccine available now- there is a bit of hope in sight so hopefully the brighter days will be coming soon, in more ways than one. Let me finish off by telling you what I’m looking forward to doing when the restrictions are lifted- seeing my family & friends, going to live shows and presenting my art collages that I have created during lockdown. It is going to be a joy but for now, we just need to be patient and we will get through this one day.

Stay Safe Everyone!

Tags: Cerebral Palsy, lockdown

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