Cerebral Palsy Scotland

Barry: Respite care and holidays

Respite care and holidays

Hello, it is Baz Smith here again with a blog and I am going tell you about two holiday centres which are run for disabled people. The centres I am talking about have 24 hours care for people who need it.

The first one I am going to talk about have four centres in England. The nearest one to Scotland is in Southport and it is call Sandpipers. I went there about six weeks before the first lockdown started, thank god I was back up the road before the UK told everyone Stay at home in March last year. The centre has Nurses and Careers all around the clock to meet the needs of disabled people. It has a bar for anyone who likes a drink. The centre looks onto the sea, which looks nice when the sun goes down at night. As well it has an indoor swimming pool. I knew before COVID19 you just need ask a member of staff and they would get it planned for you to go in with Volunteers to watch you when swimming.

You would get three meals a day. Breakfast is cooked for people who want it, or you can have a cold Breakfast. If you need help to eat or your food cut up someone will help you. When eating your breakfast have a look at the Dinner (Tea) menu and if nothing you like was on it, please tell a member of staff and they will let the cook know and they will come and ask what you want to eat.

Before COVID-19 they did bus run to get people out, but I do not know about now. Most days the Bus runs to visit some places liked the shops in different towns. If you want go you can go to four places a week. A member of staff would come around on a Monday and tell them what trips are on for that week, and the person picks. Then when everyone has picked the staff tell everybody when they are going out and who will be going with them to meet their support need. On the day you are out you are given a packed lurch before you go on the bus. All their buses have lift for wheelchair, or if you are not good on your feet.

You might be asking yourself now can I get there from Scotland, if you get the train down you need to change at Waling then walk about 5 minutes’ walk. If you are in wheelchair you must book Trains and Ramps. When you get to Southport you get cab up to Sandpipers or walk up, which would take about 30 minute. You will pass by the smallest pub in England but it doesn’t have any Wheelchair access.

In every bedroom there is your own Tv and en-suite toilet with hand rail and a wheelchair access Shower and Shower Chair if needed, as well over head Hoist and the beds can move up and down. There is an on call button. The night staff can do night check if for anyone who needs it.

If you do not want to go Sandpipers, they have three more Centres around England, to find more about them please visit https://revitalise.org.uk/

The next Holiday place I am going tell you about is Calvert Kielder.

You can go there with your family or friends. Or, if you are over age of 18 you can go on respite and let their Staff take care of you.

At Calvert Kielder they have got a respite team for any disabled person over the age of 18 who wants go on holiday by themselves and get their support needs met by the team at Kielder, like washing, bathing, dressing and feeding. When booking you tell them your needs so the staff know how to support you on your holiday.

If you are a part of the respite team, the staff will make a support plan up with you, so all your needs will get met. You will stay in main centre where the carers are on around the clock. If you are on respite team you get three meals a days and a programme of things do is setup. for liked going a Buggy and water sports no matter which age you are.

Family who have someone with a disability can go and stay in a little house and ask if they can take part in things to do. It has a swimming pool and a hot room to. Some schools go because it is an outdoor holiday. If you need help to get there they would pick you up anywhere within 50 miles for a small cost, they have wheelchairs and all the aids you could think of.

World CP Day

Participating in World Cerebral Palsy Day

Cerebral Palsy Scotland is keen to learn and engage with other organisations nationally and internationally to share learning about care and support for people with cerebral palsy.

Every 6 October, we participate in World Cerebral Palsy Day.

Our main contribution to World CP Day is holding our annual Cerebral Palsy Scotland Conference and Exhibition.

In 2019, we also participated in the #GoGreen4CP initiative, an international campaign to light up buildings green to raise awareness of cerebral palsy. See News: Celebrating and raising awareness on World Cerebral Palsy Day.

National alliances

Cerebral Palsy Scotland contributes to a number of national alliances and networks.

All-Party Parliamentary Group on Cerebral Palsy

Cerebral Palsy Scotland’s CEO, Stephanie Fraser, sits as an officer on the APPG on Cerebral Palsy. The APPG on Cerebral Palsy recently published its first report, looking at the role of early intervention in children with CP.

National Advisory Committee for Neurological Conditions

In December 2019 we were involved in helping the Scottish Government produce the first national five-year plan for neurological conditions: Neurological Care and Support in Scotland: A Framework for Action 2020 – 2025. A detailed implementation plan is currently being worked on with early actions identified.

The implementation of the new Framework for Action 2020-2025 is being supported by the Scottish Government’s National Advisory Committee for Neurological Conditions. Currently, Cerebral Palsy Scotland’s CEO, Stephanie Fraser, is Chair of this committee.

The Neurological Alliance of Scotland

Cerebral Palsy Scotland is also an active member of The Neurological Alliance of Scotland. Our membership enables us to represent people with cerebral palsy’s concerns at a wider level and allows us to learn from the experience of other condition-specific organisations.

Health and Social Care Alliance Scotland (the ALLIANCE)

We are also a member of the Health and Social Care Alliance Scotland (the ALLIANCE). The ALLIANCE support Cerebral Palsy Scotland to ensure that people with CP are able to sit at the heart of design, delivery and improvement of support and services.

Scottish Parliament Cross Party Group on Disability

Cerebral Palsy Scotland attend the Scottish Parliament Cross Party Group on Disability. We engage with the Scottish Government Children and Families Directorate around the Getting it right for every child (GIRFEC) policy, and also feed into the Community Health and Social Care Directorate to support people with communication needs, particularly those who require Augmentative and Alternative Communication (AAC).

 

Counting people with CP

Asking the Scottish Government to count people with cerebral palsy

At present, statutory services across Scotland are not able to identify how many people with cerebral palsy use their services. Cerebral Palsy Scotland believes that, if statutory services do not count people with cerebral palsy then people with cerebral palsy are not counted and valued by service providers.

We are working to change this and to hold the Scottish Government to account so that we can support the development of systems and processes for service planning based on evidence of need.

Support for adults with CP

Statutory services for people with cerebral palsy are concentrated in children’s services and education. There is no specialist therapy service for adults with cerebral palsy in Scotland, apart from the adult services provided by Cerebral Palsy Scotland. This must change.

SIGN guidelines for adults with cerebral palsy

Cerebral Palsy Scotland are requesting that following the publication of the NICE guidelines for adults with cerebral palsy in January 2019 the Scottish Government enable the publication of the equivalent SIGN guidelines for adults with cerebral palsy in Scotland. The NICE guidelines aim to improve health and wellbeing, promote access to services and support participation and independent living.

Implementation of SIGN guidelines would ensure that those living with CP are treated on an equal basis as those living with other neurological conditions, such as epilepsy or Parkinson’s Disease. They would additionally give the right to an annual review with a specialist in CP to ensure this non-static condition is managed before physical changes become entrenched.

Survey results: Statutory services not meeting the needs of the majority

We surveyed the cerebral palsy community in Scotland in November 2021. A summary of the findings show that much more support is urgently needed.

When asked if NHS services are meeting your needs:

  • 45% said NHS services were ‘not at all’ meeting their needs
  • 20% said NHS services were meeting their needs ‘a little’
  • Only 11% said NHS services were meeting their needs ‘fully’ or ‘a lot’

Many are seeing key NHS services less than once a year:

  • 34% see an NHS physiotherapist less than once a year
  • 33% see an NHS occupational therapist less than once a year
  • 32% see an NHS neurologist less than once a year

Many are relying on non-NHS services:

  • 40% of respondents use private therapy, and 53% use Cerebral Palsy Scotland services.

People are experiencing poor transitions

  • Of those who had experienced a transition in the past five years (from children’s to adults’ services, or adults’ to older people’s services), 86% described the experience as “very poor” or “poor”

About the respondents:

  • Over half (58%) need ‘full’ or ‘a lot’ of support to complete daily tasks
  • Nearly half (48%) have a learning disability
  • A fifth (21%) experience a ‘great deal’ or ‘a lot’ of pain

Comments from survey respondents:

“Currently having free sessions from CP Scotland 1st one was amazing and a breath of fresh air that someone wanted to help me rather than assign me to the scrap heap”

“I have to pay for private neuro-physiotherapy twice a month and have done for many years because the NHS therapy service is so ill-equipped to meet the needs of adults with CP. This is a financial burden that I should not have to bear.”

“Physiotherapy service diminishes the second you transfer to adult services .It feels like you have to ask for physio now instead of having a regular plan of treatment”

“Child services were reasonably good. There were always regular reviews with the neurologist which was reassuring. But we didn’t transfer to the care of a neurologist in adult services – just told to go to GP if need help.”

“I had no real transition to the older people’s team and the experience was horrendous”

“I have to pay for a lot of the treatments that support my health as the NHS are unable to fund or provide them, at least not often enough”

“Cerebral Palsy Scotland is the only support we have found, and that was just this year. For 16 years, there has been no support at all.”

“Cerebral palsy is forgotten about in adults and everything is a learn to live with it approach”

“As a person who is experiencing the effects of ageing with CP I have struggled to receive appropriate NHS provision for many years. My GP service is very good but they can only offer services that exist and what services do exist are not fit to meet the needs of adults with CP. I have attended the local rehab centre many times and I have been shocked and upset at their lack of interest in me as a person and the physical issues I face due to ageing. A few staff have tried to offer treatment but the overall response to my needs has been ad hoc and lacking urgency.”