Cerebral Palsy Scotland

Getting my Covid-19 vaccine

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.

Help us a build a picture of the impact of Covid-19 on people with CP

Help us show the impact of Covid-19 on people with cerebral palsy and their families

We find ourselves nearly a year into living with restrictions; schools are closed, face-to-face services are reduced, and we are all staying close to home.

We know all of these things have had a huge impact on people with cerebral palsy, their families and carers, and we want to ask you to complete a survey to help us build a national picture of what life is like now for the cerebral palsy community.

Through the two surveys we carried out in May and September last year, we gained really valuable information that helped us make sure our services helped people in ways that they needed. We were also able to share the information to inform government and policy makers what life was like for you.

 

How this survey will help

We plan to use this survey to:

  1. Make sure the services and support we provide are still working for you.
  2. Help us develop new services to address new challenges that may have arisen over the last few months.
  3. Tell key agencies like the Scottish Government or NHS about the issues faced by the CP community.
  4. Tell our funders about the additional pressures people are facing so that we can secure the resources we need to help people with CP and their families.

 

How to take part

Just click on the link below to take you straight to the online survey.

Click here to go to the survey

The survey will remain open until midnight on 19 February, but the more information we receive and the sooner we receive it, the more able we will be to deliver effective support to everyone that needs it.

The team at Cerebral Palsy Scotland really appreciate you taking the time to complete this survey. Thank you for your support.

Life after lockdown – Survey Results

As restrictions have eased and some aspects of life have returned to something more like normal, how have things changed for people with CP?

Thank you to everyone who completed the survey about living with CP during the pandemic, and how it’s affecting your lives.

This is what the survey said:

  • 76% said that the Covid-19 situation had put more pressure on family life
  • Over 50% said that their family was more isolated as a result of the restrictions.
  • 71% reported that any care arrangements they had in place previously were not yet back to the levels they were pre-Covid.
  • 55% responded that their physical health had declined
  • 53% responded that their mental health had declined
  • 30% of the survey classed themselves as “shielding” although only 8% reported that they had received an official letter, reflecting how vulnerable people felt as a result of their condition.
  • 58% reported difficulty in accessing support from physiotherapy, occupational therapy and speech and language therapy with 51% only able to access healthcare services online or via telephone.
  • 79% of families have sent their children back to school but of those who haven’t, 20% felt that their school or nursery would not be safe and 20% reported that the school or nursery could not currently accommodate their child.
  • 82% of respondents were happy with the level of support they had received from Cerebral Palsy Scotland.

What does this tell us?

Following on from the results of the Impact of COVID for people with CP May 2020, these updated results show that people with CP and their families have found restrictions particularly difficult, despite the need to combat COVID-19.

  • People feel more isolated and unsupported
  • Care and health services have not yet been fully restored
  • More than half report decline in physical and mental health and wellbeing
  • Many cannot access the health services they need

Read the survey results, other peoples experiences and the conclusion in full here. 

The previous survey results from May 2020 are available Impact of COVID for people with CP May 2020.

CP Connect – therapy and support during Covid

During the Covid outbreak, Cerebral Palsy Scotland’s CP Connect service is offering free therapy and support to children and adults.

CP Connect aims to help address the physical and emotional needs of people with CP at this time, and help build strength, mobility and confidence.

Find out more and register for CP Connect.

Understanding the impact of COVID-19

Please help Cerebral Palsy Scotland build up a picture of the impact of the restrictions on the lives of people with cerebral palsy.

We recognise that the current crisis has put additional pressures on people. The survey we conducted in May was extremely helpful in painting a picture of what life was like for people with cerebral palsy during lockdown. The results of the survey were widely shared with Scottish Government and the NHS, University studies and umbrella bodies such as Neurological Alliance of Scotland and the Health and Social Care Alliance. The survey was even highlighted in an article in The Times this month. At Cerebral Palsy Scotland we used the findings to guide us on how we could support people during this time. Thank you for taking part.

Now that restrictions are easing, shielding is paused and the schools have returned, we would like to check in with you again to see how people are feeling now. This will help us build up a more robust evidence and track the impact of the restrictions for people with cerebral palsy over time.

By completing this short survey, you will help us to:

• check the services and support we are providing remain relevant and helpful,
• find out if we need to adapt our current services, or develop new ones,
• inform key agencies like the Scottish Government and the NHS about the issues faced by the CP community,
• report back to organisations that fund us about and additional pressures people are facing so we can secure the resources needed to help.

The survey will remain open until midnight on Tuesday 1 September. The more information we receive and the sooner we receive it, the more able we will be to deliver effective support to everyone that needs it.

Thank you in advance for taking the time to complete the survey. We really appreciate your help.

Take the survey

 

Welcome back!

Therapy at the Centre

The centre has had a facelift and has (finally) been re-branded fully as Cerebral Palsy Scotland.

We have installed some adaptations to the centre in order to ensure staff and your safety. (You will see that Katie has been “boxed in” with Perspex in reception!)

When you attend the centre there will be some new procedures to follow:

  • All visitor access is by prior appointment only.
  • We are asking everyone to arrive just before their appointment time and to call us on the telephone from the car park so that we can let you into the building without you having to touch door buttons and handles.
  • Unfortunately there are no waiting facilities in reception and we can’t offer you our usual teas/coffees/juice to welcome you in.
  • We will take the temperature of everyone who enters the building with a non-contact forehead thermometer.
  • Everyone will be asked to sanitise their hands prior to accessing any areas within the Centre. (We have sourced some branded automatic dispensers for this).
  • You will be shown directly to your designated therapy room which will have been thoroughly sanitised prior to their session.
  • The therapists will wear appropriate PPE (including face coverings and gloves) during therapy sessions.
  • We’re asking those that can, to wear a face covering during your time in the centre. If you don’t have a mask, we have disposable ones available.
  • We’re also asking that anyone attending for a therapy session only attends with one other parent/carer (unless otherwise agreed in advance) who should remain 2 metres apart from the therapists and staff whilst in the building wherever possible.

Appointments are having to be spread out so that we can ensure the rooms are fully cleaned between sessions. We have extra hand sanitiser, sprays, wipes and disposable paper towels available for your use during your visit and we are taking every precaution we can to enable us to resume our therapy sessions in person.

As expected, we do ask that you only attend the centre if you are well. If you or anyone in your household has coronavirus symptoms you must not attend the centre.  The most common symptoms are new:

  • continuous cough
  • fever/high temperature (37.8C or greater)
  • loss of, or change in, sense of smell or taste (anosmia)

A new continuous cough is where you:

  • have a new cough that’s lasted for an hour
  • have had 3 or more episodes of coughing in 24 hours
  • are coughing more than usual

A high temperature is feeling hot to the touch on your chest or back (you don’t need to measure your temperature). You may feel warm, cold or shivery.

If you’ve developed symptoms (however mild) in the last 7 days, you must stay at home for 7 days from the start of your symptoms and arrange to be tested. Do not go to your GP, pharmacy or hospital.

We hope that despite everything, you will still experience a very warm welcome when you come into the centre.  We are so pleased to be able to welcome people back and please do feel free to call if you have any questions about what the changes mean for you.

If you would like to enquire about appointments, please contact us HERE.