Swansea Parent Carer Forum

APRIL NEWSLETTER

The Forum have recently signed up to Easyfundraising.

It's a way of SPCF getting donations to support our work, and you can use it if you'd like to. All you have to do is sign up [here] and then use the Easyfundraising site when you buy from loads of online stores, including Amazon! This costs you no more than you would usually spend on what you buy, so we'd appreciate your support, if you are able.

Save the date!
A reminder that, as this year marks the 5th anniversary of the formation of Swansea Parent Carer Forum we will be celebrating all the fabulous parent carers in Swansea and everything the Forum have achieved so far on Tuesday 24th September at Swansea Arena. We hope you can join us.

Some of the activities we have been involved in this month:

Swansea

Play Theory & Advocacy
Swansea Poverty Partnership Forum
Play Network
Play Access Group
Catch up with Child & Family Services
Gower College
Task and finish group : supporting your child/adult through the diagnostic journey
Update on Post 16 implementation IDP Transfer to Further Education
Catch up with the Direct Payment Team
Llwyndrerw School ALN parents meet up
Autism Code of Practice Development Group
Swansea Volunteer Management Forum

Regional

Learning Disability Regional Intergration Funding Panel
West Glamorgan Regional Partnership Board
Extraordinary Neurodiverse Board: Funding meeting
Steering and Advisory Boards 1&2
West Glamorgan Neurodiverse Programme Board
Alliance Health Professionals Collaborative meeting

National

Gwent Parent Network
Wales Carer Poverty Focus Group for carers

If you would like to know more about any aspect of our work or indeed would like to raise an issue do get in touch info@swanseapcf.org

You may have seen from the list of meetings we attend that the meeting below, under regional, was mentioned. We just thought that an explanation of what is discussed at the meeting might be of interest

*Steering and Advisory Board 1 (SAB1) Update
SAB1 met on Tuesday 2nd April and members received an update on the Carers Programme. A key outcome that’s made a real difference is the short breaks scheme, which was introduced last year following feedback from Carers who felt having the ability to apply for funding for a short break from their caring role would be hugely valuable. Grant funding was made available for both adults and Young Carers, who had the opportunity to apply for a funded short break tailored specifically to them and their personal needs and interests. This funding is due to be renewed for another year, and options on how it could be allocated are being explored.
The topic of communications and engagement with Carers was also raised at SAB1, and plans are underway to arrange an annual event for Carers, along with a separate dedicated event for young Carers. A radio campaign to highlight the vital work of unpaid Carers is also in the pipeline, so please keep an eye (or ear!) out for that.

We have been busy collating the findings from Swansea Parent Carer Forum Big Survey 2023 ( we will be sharing the report shortly ). One of the questions the survey asked was what training members would find helpful. As a result of your responses we applied for some funding to host Bladder & Bowel Health Workshop. Thanks to Austin Bailey Foundation we were able to run the workshop in April.

Stolen Lives Homes Not Hospitals launched its petition to the Senedd at a packed protest on Wednesday 17^th April supported by individuals, parents & self advocate voices. The Homes Not Hospitals protest has been organised by Stolen Lives, a group of families and carers calling for the release of people with a learning disability and/or autistic people from secure hospital settings in Wales.
This is not a new issue, in 2020, just before the pandemic hit, the Welsh Government’s National Care Review highlighted that 166 people with a learning disability were having their care in hospital settings. The report made 70 recommendations, one of which states clearly that people should only stay in hospitals if there are no other ways to treat them safely.

It is over 40 years since the pioneering All Wales Strategy was first published in 1983, which aimed to get people with a learning disability out of long stay hospitals and be supported to live in their local communities. However, today people with a learning disability and/or autism are still being sectioned and inappropriately placed in hospital settings simply because the right support is not available in their local area.

People with a learning disability and/or autism should be able to receive the care and support they need in their communities whatever their needs, deserve homes not hospitals. You can read the Stolen Lives manifesto, including easy read versions, here: Stolen Lives blog.

You can support this campaign by signing the petition.
https://petitions.senedd.wales/petitions/246179

The Care Inspectorate Wales (CIW) is conducting a Performance Evaluation Inspection in Swansea Council Adult Services from the end of April into May. They are reviewing how well local authorities are discharging their statutory functions to keep people who need care and support, and carers who need support, safe and promote their well-being. The People Survey – Performance Evaluation Inspection can be found at: https://www.smartsurvey.co.uk/s/peoplesurveypei/ individual comments are confidential, however, they may be used to provide feedback to the local authority. If you would prefer to speak to someone about your feedback contact 03007900126 or contact CIWLocalAuthority@gov.wales

Support in the workplace for carers

A systematic review by the Department of Work and Pensions shows carers with health problems are more likely to exit employment. Those who provide intense levels of care are between two and three times more likely to also suffer from ill health. However, there is less understanding about the landscape of carer-friendly workplaces in the UK. The Carers Trust and Simplyhealth research will examine carers’ experience of balancing their health needs with employment, alongside what dedicated support exists nationally in the workplace to support their health and wellbeing.
The research is being reviewed and shaped by unpaid carers. It launches with a survey for unpaid carers who have a health condition, looking at their experiences of applying to, and being in, paid work. A further survey with employers will be carried out at a later date, alongside interviews with both unpaid carers and employers to get an in-depth understanding of the issue.
The research findings will be published later this year. They will lead to a set of recommendations for employers that will help them better understand what support is needed, while also helping unpaid carers balance caring with work.
The survey is available to fill in at https://forms.office.com/e/APKh9bjSRP

Track The Act As an unpaid carer are you accessing your rights?

Carers Wales are asking the carers of Wales, to tell us whether you have seen or received information about caring in your local community. Whether you have received advice to support you in your caring role and if you have been involved in activities and support run in your local community. We also would like to know about your experience with Carers' Needs Assessments and what kind of personal support you currently have as a carer.
Most importantly, we want to know how you feel your rights are being enacted and how you would like to see carer provision supplied moving forward. https://buff.ly/46EnOPk

Day Opportunities Review Report

A report published by the Association of Directors of Social Services (ADSS) Cymru into day opportunities since the pandemic has made 7 recommendations to improve service provision across Wales. Read the report here.

Cerebra DLA Myth Buster aims to debunk common myths around Disability Living Allowance. Download the full Myth buster [here]

FEBRUARY NEWSLETTER

Time To Unwind Coffee Mornings

Venue: Manselton Community Centre
Time: 1000 to 1200
Dates: Tuesday 19th March

Please keep an eye out on our socials [here] for updates on our work.

Following many requests from parent carers for us to host this workshop, we are pleased to have received funding from the Austin Bailey Foundation, and will be holding a Bladder & Bowel workshop on Tuesday 16th April. Very few spaces remaining! Book [here]. We will be running the always popular Accessing Public Services workshop with Cerebra again in June - look out for details after Easter.

The Once for Wales Health Profile is designed to be used at all types of health care visits, including GP, optician, dentist and social care. It replaces communication tools, such as the hospital passport. There is a Profile for adults and for children and young people.

The Health Profile will help people with learning disabilities to get good, safe healthcare at the time they need it. People with learning disabilities themselves, their families and carers as well as wide range of health professionals have been involved in its development and have informed the content and format. The profile will contain information about the person's health, care and support needs and communication. It's available to download and print and there are accompanying guidance notes.

The Carer's Leave Act comes into effect on 6 April 2024, every employer must be ready to support unpaid carers in their workplace. Carers UK are running training events during March to make sure employers understand the implications of this new legislation. You can book [here].

Families in England and Wales Warm Home Discount Scheme Most families on lower incomes with higher energy costs are eligible for and automatically receive the payment as a £150 deduction from their fuel bill. Unfortunately, due to rule changes in December 2022, suppliers no longer have discretion to offer the discount to families who get disability benefits but no means-tested benefits. You might receive a letter telling you to call a dedicated helpline to provide further evidence. This is so the government can decide whether or not if you qualify. You can find out more about the scheme [here].

Carers UK have a new information phone service for carers who prefer not to use computers or the internet. Carers can call and listen to recorded information about help with finances and household costs, caring for people with specific health conditions, looking after yourself as a carer, ways to get more support. You can call their freephone telephone on 0800 888 6999 and follow the options Help to Stay is a Welsh Government scheme which offers support to Welsh homeowners who are in, or facing, financial difficulty in paying their mortgage. You can find out more [here]. Moving from DLA to PIP can be stressful for parent carers. Many worry that their disabled child's award could be downgraded when they face a totally new assessment system. Unlike DLA, PIP (Personal Independence Payment) is based on a scoring system. To increase your child's chances of getting the right 'score', it's important to understand how the DWP interprets certain words on the form. Contact have put together a dictionary explaining some key words.

They also have a PIP Guide which contains detailed information on the scoring system, how to claim PIP, its effect on other benefits, and how to challenge decisions.

2023 is drawing to a close and it gives us great pleasure to write our final newsletter of this year. Some of us will be looking forward to the Christmas break while others will undoubtedly find the next few weeks challenging. It's a great opportunity to remind ourselves as parent carers to trust your instincts, we know our children better than anyone and you and your Christmas efforts are good enough! We will have a number of exciting announcements early in the New Year as 2024 is already promising to be a big year for influencing positive change. Our monthly coffee mornings continue in the new year with a venue change to Friends of the Young Disabled which is based on Camarthen Road in central Swansea. Keep an eye out on our socials [here] for updates on our work as we head into the New Year.

If you would like to know more about any aspect of our work or indeed would like to raise an issue do get in touch info@swanseapcf.org

You can find a comprehensive list of the food support options across Swansea [here]. Some of the main super markets still have schemes running which you might find helpful:

Asda has relaunched its £1 soup with a roll and unlimited tea or coffee for over 60s until the end of February 2024.
Morrisons has a permanent 'kids eat free' offer with every adult meal purchased over £4.49.
Sainsbury's has a 'kids eat for £1' scheme with the purchase of any adult hot main meal of at least £5.20 (during school term time).

Swansea Parent Carer Forum

We are a group of volunteer parent carers. Our children are involved with Children’s Services, Adult Services, Education and Health services.
We work with but are independent of the City & County of Swansea, and we want to make sure that services meet the needs of disabled children*, young people, adults and their families.
We believe passionately that working co-productively with Swansea Council and other service providers puts the voice of disabled children* of all ages and their families at the centre of decisions and delivers services that work for our community.
Our vision is for Swansea to be a place where the voices of families are valued and effectively used to achieve an equitable and inclusive quality of life for our children* of all ages.