In this video, the speaker talks about the issues with the current social care system in the UK.
They share 18 months of experiences dealing with local councils and care companies, focusing on the problems that come from a system driven by profit rather than genuine care.
The speaker highlights how the system mixes up who should be held financially responsible with who should actually provide ethical support, arguing that major changes are needed so people receive proper care and dignity.
James describes the excellent care his partner of 44 years recieved following a spinal chord injury. David died recently at home.
James describes the care David recieved as being like having friends in their home, and they would always let James and David know when carers were not able to visit.
James contrasts this against the care and support he recieved for himself. The difference in costs and standard of care.
James currently lives with advanced cancer. James talks about the impact of his financial situation on being able to afford the care and support he needs now.
This carer explains that the home care company looking after her mother caused lots of problems.
When the company took over her care, it changed the visit times to suit itself, didn’t communicate well, and made the family feel like they were being difficult.
The family still had to do most of the caring themselves, including helping her move, doing her physio, and making her meals.
The company also removed a stand aid without telling them, which made the mother’s health and dignity worse and led to problems like pressure sores. After a review meeting where everyone agreed to improve communication and decision making, the company phoned to say it had already decided to end the contract. This left the family with no replacement care in place.
The speaker says this shows how a profit driven care system can abandon people and leave families exhausted, while the only option offered is a care home the mother doesn’t want.
Jack shares their journey through MH and NHS system from age 18 – with anxiety, never addressing the root cause.
Jack finally age 27 met someone in MH services who really listened, and supported Jack to get a diagnosis to autism.
Jack talks about the difference someone picking this up earlier would have made not just for him, but aqlso the impact on the amount of time Jack spent in and around MH services.
Why it is hard to speak negatively about his experiences, because often it is framed as your fault, not ‘the system’, so its easier to not challenge people working in services.
Jack reminds us that the individuality in how people are supported is missed “Its about individuality which I think is so criminally missed I think in the way we offer support to people in many ways”
This carer says the subcommittee made it clear that officials were warned a decade ago but did very little, apart from underfunding services, and this has led to real harm.
They argue that councils and health bodies – like Norfolk County Council and the ICB – must not redesign learning disability or autism services without properly involving people with disabilities, people with lived experience, and family members such as siblings and parents.
These people should help make decisions, not just be invited to share sad stories.
They call for real representation, not tokenism, and suggest a “30, 30, 30” mix to ensure balance.
They also say meetings need to be run properly: with clear agendas, written minutes, named people responsible for each action, deadlines, and real consequences if things aren’t done.
Without ownership and accountability, they say, nothing actually changes. This is a call for proper coproduction.
Gina and Ian give final thoughts. Ian notes the unique opportunity NR Care has has working with an independent living provider from scratch, promotion of working in this way whilst maintaining stability. Gina talks about the need that when transitioning to working alongside care providers coming in, it is important to create a environment that is welcome for carers coming in.
So they know the door is open for a chat for any worries about residents can be supported pro-actively.
Gina highlights the importance of residents choice in deciding which care provider the The Great Hospital brought in.
Final words reflect on the need for greater communication from social care following hospital discharge when residents who need medical care return to The Great Hospital with a separate care package in place and how this could work better if it was more joined up.
Gina and Ian reflect on how the year has been and how it has made them feel.
Highlights for Ian is that after all the co-planning it has come together as he had hoped, if not even better than.
Gina is incredibly happy after working through a number of Care Providers that were unable to offer the flexibility needed to make it work alongside finding NR Care who understand what the care needs are and have an ethos of if we can make it work we will make it work.
Over the year they have got a deeper understand of what each other do, the partnership has strengthened through this relationship they also note that when issues do come up they get sorted straight away.
Zena and Angela share their observations of what get in the way of people building relationships and being human with each other.
They flag the nature of the system that is wrapped up in paperwork and forms, rather than forming relationship.
They are passionate about making the time to build connection and how important this in what they do, noting that structure and time restraints create barriers and dont work well especially for people who may be struggling at that time or day.
Being human is about understanding personalised care, what people want and not what you or another service or agency wants or think is best for someone else who is not you.
Asked what makes them smile about what they do Angela and Zena reflect on what might be seen as the little things such as seeing a smile and seeing someones personality emerge means a lot to them.
Whilst this may be a small thing they know that it is much deeper than that and sits within someone feeling valued, a sense of worth and that people know what they are entitled to such as food, heat, warmth and someone to talk to whcih is a rare resource in the world of homelessness.
In Christophers final reflections he emphasises the impact of people being able to tell their stories and be heard.
Noting the sense of being free and being able to share their experiences without being shut down.
He finishes by noting that while budgets are important, the primary focus must be on maintaining a high standard of care that is personally owned by the individual receiving it.
