How using digital tools and solutions affects personalised care for people with learning disabilities
OxFSN joined forces with Learning Disability England and Brighton and Hove Speak Up to help NHS England understand how using digital solutions (eg online meetings and appointments with medical professionals) will affect the care people with learning disabilities get. The Personalised Care Group at NHS England wanted to know how digital tools and solutions for personalised care can be inclusive and meet the accessibility requirements of people with learning disabilities.
At OxFSN we know as family carers that our family members whether children or adults need support – usually ours as parents – to get medical help. Any changes in how that happened will affect our lives as family carers – for better or worse.
Three reports are available here:
OxFSN are running their second online zoom coffee and chat session. This will take place on the 1st July from 11.15 onwards and is for any family carers who would like to drop in for a chat. There is no agenda, it’s just an informal get together with some of the OxFSN team and other family carers. We had a lot of fun last time and hope to repeat the process. You can sign in through Eventbrite here:
Upcoming zoom online events that are being hosted jointly by OxPCF and OxFSN which will be relevant to those families who family member is currently attending school or college.
The first session is for those whose son or daughter has an EHCP and will take place on the 30th June.
The second session is for those whose family member needs SEND support but does not have an EHCP. This will take place on the 16th July.
At both events will be key professionals from the SEND teams who will be answering questions.
Email: Kathy.Liddell@oxfsn.org.uk to send in questions or request booking details for all online sessions.
What is this about?
In 2018, Oxfordshire County Council did a review of its policy on what people pay towards their social care. These payments (called “contributions”) help to pay for social care services to help you in your daily life. After the review, your weekly payment towards the cost of these services may or may not have changed.
We would like to hear from you about your experiences of this process and how any changes to your weekly payment have affected you and those who support you.
Who we are and what are we asking for
Healthwatch Oxfordshire is an independent charity and is not part of the Council. We are here to help make sure that the voices of people who use support services are heard. We will use the information you provide us to tell the County Council what you think and to influence how it reviews policies in the future.
To participate in the Healthwatch Oxfordshire: Paying for your social care survey, follow the link to https://www.smartsurvey.co.uk/s/SNKQS/
OxFSN’s second Better Together Event was held on the 7th November 2019 at Didcot Civic Hall.
It was attended by 52 Professionals from Health, Social Care, Education and the voluntary sector along with 42 family carers of children or adults with learning disabilities and/or autism. 3 adults with learning disabilities and their supporters also attended.
The event followed the format of a ‘World Café’. This year there were eight tables with one topic on each table. This was as a result of feedback from people attending the previous year’s event who felt they needed more time to discuss fewer topics.
Follow the link or click on the image to read the full report.
To read previous Better Together Event Reports follow the link to:
In July 2016, Oxfordshire Family Support Network (OxFSN) began a three-year project, Embolden, to support, advocate for and empower older family carers aged 60+ years who care for a family member with a learning disability.
This report is dedicated to the 215 family carers who brought Embolden to life.
Follow the link to read the full report – Embolden Project Evaluation Report August 2019, or, click on the image below:
OxFSN’s Better Together event was held on the 8th of November 2018 at the Kassam Stadium in Oxford and attended by 117 people.
53 professionals from Health, Social Care, Education and the voluntary sector attended along with 60 family carers of children or adults with learning disabilities and/or autism and seven people with learning disabilities and their supporters.
Follow the links to read reports:
(funded by Comic Relief)
Few of us will not at some point in our life take on the role of carer for a family member. For the majority of us it is usually an elderly parent or a spouse.
There is, however, a group of people whose caring role often goes unnoticed. Who fall under our radar as not only are they silently getting on with their caring role, and have done so for all of their life, but unless we know someone in a similar situation – we often are not aware that they even exist.
These are the Family Carers whose child is born with a learning disability and who, as a result, spend their life battling, fighting, negotiating and supporting their son or daughter to lead as normal life as possible.
Through the OxFSN Embolden Project, funded by Comic Relief, we work with older family carers to give this seldom heard group of people a collective voice in order to influence and hold decision makers to account.
Equally important is the need to highlight those individual family carers, some of whom are in their 70’s, 80’s and even 90’s, who are still supporting their family member, some who are still living at home and some who are living out of county.
This small exhibition aims to give each family carer or carers their own unique voice but also to show that whatever the circumstances of their family member, the family carer cannot step back and ‘retire’. Each story gives an insight in to the range of support and involvement they have given and continue to do so.
We would like to thank each of these family carers for allowing us to share their own individual and personal stories. They reflect the range of emotions that comes with raising a child with a learning disability – the hopes, the fears, the uncertainty and best of all the joy and laughter that each and everyone brings.
To us they are the unsung heroes who have fought to ensure that their ‘child’ is given the same recognition that we want for any of our children but have unselfishly dedicated all their life to doing so.
With special thanks to Sara Ryan for providing the photographs of our family carers.
The photographs and carers’ Life Long Caring stories are currently on display at Oxfordshire County Council County Hall during the month of June 2019.
For further information contact Kathy Liddell, em·bold·en Project Administrator.
Oxfordshire Family Support Network – Statement: Whorlton Hall Abuse – Panorama exposé
The abuse, mistreatment, mental and physical torture of people with learning disabilities and/or Autism at Whorlton Hall has shocked, distressed and angered all of us. How can this still be happening, 8 years on from Winterbourne and following the Government’s public commitment to transform care?
OxFSN believe that it is too easy to simply blame the culture of one institution and specific individuals who perpetrate this abhorrent abuse. While these individuals and those who stood by and did nothing are clearly culpable there is system wide responsibility. Health Care and support Providers, Commissioners, Local Authorities, the CQC and the Government must all be accountable and accept responsibility for allowing this to continue.
Families all around the country have been raising concerns for years about the poor treatment in these places and their voices have been ignored, individually and collectively. It should not have been the responsibility of an undercover reporter to expose this abuse when systems and processes are meant to be there to safeguard people. We urge statutory agencies around the country to listen to, believe and support families who flag up concerns about their loved ones and take immediate action when they hear about poor practice.
We are seriously concerned that CQC could have rated this hospital as ‘Good’ only last year, when the hostile culture of that service was clearly, deeply embedded. The environment alone was oppressive and grim beyond words and this should have raised immediate concerns. We are shocked that there were 100 visits from officials and NHS staff in the year before the abuse was uncovered and a former Inspector’s warnings, as far back as 2015 were ignored.
Anyone visiting these institutions has to know what a good service looks and feels like and so we therefore have to seriously question the quality and skills of the inspectors as well as those undertaking Care and Treatment Reviews and the processes of both. We are also deeply concerned that there is still a reliance on questioning staff and other professionals and believing them, rather than using their eyes and ears to observe people and speak to them and their families, without staff being present. If any service supporting vulnerable people, whether supported living, residential care or hospital doesn’t demonstrate that they work with and involve people’s families it should be a huge ‘red flag’.
There will inevitably be discussions about funding. It’s a fact that despite increasing need, successive Governments have chronically underfunded social care services year on year for decades. This underfunding has led local authorities to focus on fire – fighting crises rather than on prevention and developing local community based solutions. While there is a high financial cost to keeping people in this non/abusive ‘care’, this is clearly not just about money, it is about how and where money is being spent. People end up in these institutions when their current support breaks down, at
a horrendous human cost so, a focus has to be on prevention and local crisis provision. Money could be better spent on ensuring staff are better trained and appropriately paid for the skills needed to support people to prevent crisis intervention being needed. When or if there is a breakdown in support or people need treatment they should be assessed, treated and discharged as soon as possible, close to home, as with any other medical treatment. Until that happens large private hospitals will continue to be paid millions of pounds to, at best, keep people incarcerated and away from their families and at worst tortured and abused and make a profit in the process. We believe that the solutions lie with a total rethink of the so called system, which is clearly not fit for purpose. This needs real blue sky thinking done in total partnership with families and people with learning disabilities and autism, with a funding system that bridges the gap whilst that takes place.
Oxfordshire currently has three people in Assessment and Treatment Units out of county, and OxFSN supports two of their families. We are working hard alongside NHS and Oxfordshire County Council staff to ensure that these families are listened to and supported and their loved ones come back closer to their families. As a family carer led charity OxFSN will continue to work alongside families and our local services to come up with coproduced local solutions, so there is no need to send people to these large private institutions in the future. And, we will continue to press NHS England for the funding needed to do it!
We aim to build on the good foundations that we have started to lay here through the local Transforming Care Programme. There is much to do but we know what needs to happen locally and will continue to strive to ensure it happens. Alongside this we will continue to support all those families whose fear and anxiety levels will have increased to unprecedented levels. Trust has inevitably been damaged by this and families will feel they need to be ever more vigilant to protect their loved ones.
Finally, our thoughts are with the victims and their families who have had to endure this horrific experience. We thank them for sharing their experiences, it must have been desperately difficult to do this. Our thoughts are also with all the people with learning disabilities and autism currently detained in Assessment and Treatment Units around the country and their families. As parents and family carers ourselves we can only begin to imagine how they are all feeling right now and hope they all get the support they need.
On behalf of Oxfordshire Family Support Network
(PDF File: OxFSN_Statement_Whorlton_Hall_Abuse-Panorama.pdf)
REACH Standards – constantly aspire for better Reflections on Supported Living today.
The Radio 4 programme, File on 4 on 12 February 2019 looked at supported living and what the increases in unexplained deaths and serious injuries mean for those living in supported living environments. At LDE we believe that institutionalisation can happen in any setting if strong values and principles are not driving how the support is designed and delivered. Good https://epilepsy.wales/kamagra-sildenafil care and support cannot be achieved when economic factors rather than the people supported have come to dominate the shape of available care models…
To read more follow this link: REACH – Reflections on Supported Living today
We have been contacted by a number of families who have been through reviews of their relative’s support packages and have had their budgets cut.
If this has happened to you please get in touch with OxFSN and tell us what happened. We are trying to compile evidence so we can get a clearer picture of what is happening and if necessary challenge.
If you have recently had a review for your relative or have one booked in the coming months, please could you get in touch with OxFSN so we can advise.
Follow this link to read more: Personal budget cuts – Call for Evidence
Welcome to our November 2017 Em.Bold.en newsletter. This is a regular update to let you know what we’ve been doing and planned events for 2018.
The Embolden project (funded by Comic Relief) was started to give a strong voice for older families who have relatives with learning disabilities to influence decision makers, hold them to account and improve services.
The Embolden project aims to give a strong voice to family carers and to influence and hold decision makers to account within health and social care services.
This report sets out the current knowledge on the numbers of older family carers in Oxfordshire, caring for an adult relative or friend with a learning disability (LD).
It aims to make the case for increasing current knowledge in health and social care services – both statutory and independent of the numbers and profiles of older carers of people with learning disabilities in Oxfordshire, in order to meet their needs and plan support for their futures.
To read the full report follow the link to:
This year Oxfordshire Family Support Network (OxFSN) ran a series of workshops around the county to explore, debate and create solutions for families supporting adults with learning disabilities, especially older families.
Read the first Embolden Newsletter December 2016
The Embolden Project (funded by Comic Relief) asked carers:
- What are health and social care services planning for the immediate future – and how will it affect you?
- How do we protect and plan for the long-term future of our loved ones when public services face hard times?
- Do we need older family policies?
- How do we change services to meet the needs of older people with learning disabilities?
The aim of the project is to give a strong voice to family carers and to influence and hold decision makers to account within health and social care services.
OxFSN will schedule more Embolden events and workshops in 2017.
Family carers at the “Meet the Decision Makers” event in November 2016
A new report commissioned by Healthwatch Oxfordshire and delivered by the Oxfordshire Family Support Network (OxFSN) sheds light on the difficulties faced by families seeking appropriate care and support for loved ones with learning disabilities, autistic spectrum disorder and mental health needs or challenging behaviours.
The report highlights the failures in respect of the current system in Oxfordshire and calls on local commissioners to work with families and service users to create services which meet their needs by working with them as ‘experts by experience’.
To read the full report please click on the link here,
Further information is also available by following the link to Healthwatch Oxfordshire.
Follow this link to view: OxFSN ANNUAL REPORT and ACCOUNTS 2020-2021
The CBF and the Tizard Centre are working in partnership, supported by an advisory group, to seek the views and perspectives of children and adults with severe or profound and multiple learning disabilities.
Everyone has the right to have a say about their own life and about wider issues that impact on them. This includes children, young people and adults with severe and profound and multiple learning disabilities. In reality, we know that these perspectives are seldom heard. This can be because people think it is too difficult, but this is not true, it just requires more skilled, creative and personalised approaches.
The CBF and the Tizard Centre have been developing ways to improve how we seek the views of people with severe and profound learning disabilities. In recognition of the need to get better at seeking the views of children and adults with learning disabilities and with more complex communication challenges, NHS England has funded the Seldom Heard project.
We are pleased to announce the launch of the Seldom Heard webpage today, which contains lots more information about the project and related work, including the first in our series of communication blogs.
Check out the brand new Seldom Heard Webpage here: https://bit.ly/3fcsRzo
ANNUAL GENERAL MEETING
The Annual General Meeting of the Oxfordshire Family Support Network
(OxFSN) will be held on:
Thursday 17th September
10.30 am – 11.30 am
Online via Zoom
Please RSVP to Kathy.email@example.com by 3.00pm, Wednesday 16th September if you would like to attend.
As the meeting will be held on line, a link to join via zoom will be sent prior to the meeting.
Note: A Member who is absent from a General Meeting may appoint any person to act as their proxy. Please email firstname.lastname@example.org for the proxy form if you require it.