Authors:              Linda Sumpter and Jon Symonds on behalf of the Group based at the University of Bristol



1              Introduction

1.1              This submission is made on behalf of members of the ConnectED Service User and Carer Advisory Group.  The Connecting Evidence with Decision Making Project (ConnectED) is an NIHR-funded project that aims to help decision-makers in Adult Social Care make better decisions by growing their ability to use research.  The project is a partnership between experts by experience, adult social care providers and practitioners, and academic researchers.  The Service User and Carer Advisory Group is integral to co-producing this project which is led by the University of Bristol.

1.2              The Group is made up of a diverse range of people with current, lived experience of adult social care services.  Their involvement in the project stems from their motivation to forefront the voice of experts by experience to improve the impact of adult social care.  The opportunity to contribute to this call for evidence was taken up very readily by the Group.  A member of the academic team collated the insights and recommendations of individuals within the Group and has set them out here as expressed by the individuals and without any additional input.  The Group has verified the submission.


2              Putting co-production at the heart of care

2.1              We have started with this aspect of the call as it relates directly to the work of our Group.  Two members of the Group provided evidence in relation to Question 2 as set out in the call:


Putting co-production at the heart of care – Q2 Question 2 


It is often difficult for people who draw on care and support and carers to exercise choice and control if they do not know what good support looks like, or what kinds of care and support might be available.  What information and support could be helpful to address this and how could it be made available more easily? 



2.2              Insights and recommendations of first expert by experience

2.3              It would definitely be helpful to have more guidance on what I could have expected when first starting my journey with adult social care.  I receive direct payments and so had two choices, employ my own Personal Assistant (PA) or send the money to an agency and have agency carers.  I felt I did not make an informed choice, and could have done with much better explanation of all the pros and cons and perhaps been encouraged to meet with an agency and a PA before making my choice to explore both options.  


2.4              It is of course not the social workers’ decision or job to steer you towards one option or the other but they know the system much better, and are better placed to point out the advantages and disadvantages.  I think some better reading material on it, or if they don’t want the social worker to do that, someone else within the team who advises on the options and then follows up to see if those options are working (alongside the social worker), and then if not, gives support on other options available.


2.5              I had to recruit the PA - I had help for advertising but it was very stressful.  The reason I chose a PA is because I thought if I went for an agency I would get different workers each shift and that would be very bad for me.  This was incorrect I found out later as I am now with an agency and have no more than two different members of staff.  The PA system meant I had to manage being their employer, paying them, managing all the money, finances, and what to do when they were turning up late.  No one warned me this was all going to be involved and I think that could be explained much much better.  I couldn’t understand the finances and had to get my dad to help.  Now I don’t manage them at all, it’s all managed by the agency and a third party.  


2.6              They could ask people who currently have a PA or those who use an agency to contribute also to a webpage or booklet explaining with quotes why they chose that or why it works for them - what are the pros and cons.  I think if I had heard some things from other service users that would have helped me a lot.



2.7              Insights and recommendations of second expert by experience:

2.8              I would firstly agree with the question that it is often difficult for people who find that they need to draw on care and support and engage the help and services of carers to exercise the correct choice and maintain control of appropriate care.  This currently varies from local authority to local authority, and at the same time, if signposting for care and support is not joined up with all care services, it is no wonder why people do not know what good support looks like, or at the same time what kinds of care and support might be available.


2.9              So what changes could be made to [improve] signposting with all levels of the health service and social services along with relevant charitable organisations?  The information and how to access support could be better addressed by better joined-up levels of training plus health professionals and charitable organisations that can also help by better signposting.


2.10              For example, where a family member is requiring extra support because other family members are not able to provide the level of care that could be needed on an everyday and ongoing basis. 


2.11              You need to remember here that family members will often not have the experience and knowledge.



3              The invisibility of adult social care and its consequences

3.1              Insights and recommendations of third expert by experience.  These relate to the questions that they have direct experience of:

3.2              Q1: One of the fundamental challenges facing adult social care is that it is ‘invisible’.  Do you agree?  What do you think explains this?

3.3              I think much of this stems from the narrative coming from government and the media.  These questions reflect that - what is meant by carers and social care?  I understood originally the term “carer” was intended to be used to refer to what are now called “unpaid carers” as the carers title was adopted by care workers and a new definition was needed.  How do people know they are an unpaid carer?  There’s no formal definition, many become carers by stealth and simply do what any spouse or family member does.  After all, the current Home Secretary during the Brexit transition process, when asked about the gaps in workforces said there were enough “economically inactive” people which included unpaid carers.  Yet the criteria for carers allowance is so tight, and a carer cannot earn a penny over £132 per week to retain the paltry £68.xx per week.  In the House of Commons when asked by Sir Ed Davey specifically about unpaid carers, the PM waffled on about training and development opportunities for paid care workers.  This government routinely fails to afford any recognition to unpaid carers despite the vast sums of money they save the tax payer.  Media generally only cover paid care workers, and there is no consistency in raising the population’s awareness of the invisible army, the same size as the NHS which is literally holding up the social care and NHS.  If all unpaid carers decided overnight to stop, councils would not be able to fulfil their legal duties.

3.4           Q2:  What are the key changes that need to be made to reduce the invisibility of adult social care?

3.5              It needs to be considered as a role equal to the NHS and care workers.  Politicians need to start recognising the “donation” of almost £20,000 per annum unpaid carers make by the work they do.  It can be a full time 24/7 job.  There’s no sick pay, no annual leave, no bank holidays, no minimum rest breaks between “shifts”.  It’s constant, and all for less than £2 an hour.  It’s better paid to be sick or looking for work than for working on call 24/7.

3.6              Q3:  How does this invisibility reflect the experience of social care for people who draw on care and support and their carers, and how is this experience different depending on the age range and particular circumstances of those who draw on care and support and their carers?

3.7              The general public have very little idea of the existence of us, what we do, and how much we contribute to saving them tax, not the burdens the government would have them believe we are.

3.8           Q4:  How would you define the purpose of adult social care?  How does the invisibility of adult social care get in the way of achieving this purpose?

3.9              This is another area that is not clearly defined.  What is meant by social care, and how and when is that different to the care needed to maintain an individual’s wellbeing, as is their basic human right?  To one person gardening may not be considered care.  Yet if the individual needing help was a keen gardener and seeing their pride and joy unkempt could significantly impact their mental wellbeing, and is then a health condition, this is therefore to them a care need.  The lack of any clear definitions serves only to add to the confusion.  When does a spouse become a carer?  If the person gradually needs help with more and more elements of the natural ageing process that is not the same as people with health conditions, such as sight loss, that leave them dependant on others for help.

3.10              Q6:  What are the key challenges that people who draw on care and support and carers will face in the future, which are not factored into current assumptions related to the social care system, for example the fact that some families will age without children to care for them?  How are these challenges different for younger and for older adults who draw on care?  What should be done now to address them?

3.11              The fact that it is assumed that children will care for their parents is symptomatic of the problem.  My Mum needs care, suddenly, my Dad is now her carer (she was his due to sight loss) and I can’t help as I care 24/7 for my husband.  We have no children so no one will look after me, yet I can’t look after my parents either.  The Lib Dems suggested a dedicated social care “tax” and it seems sensible.  However under the Health and Social Care bill the extra NI this year is going to the NHS to tackle the COVID and Tory austerity backlog, which technically isn’t social care.  In my view the way forward is that this is one single tax, maybe needs to be a phased increase so that people now entering work build up a “NI pot for medical and “social” care”.  Maybe it needs to be simply referred to as individual care needs.  Why should some conditions such as dementia be so poorly supported by CHC?  These are medical conditions, not frailty or a natural part of the ageing process.

3.12      Q7:  How can other public services (such as the NHS) play their part in tackling the invisibility of adult social care?

3.13              My experience in hospital has generally been positive, being a valued member of my husband’s care team, and integral to his wellbeing.  This needs to become the gold standard for all health professionals.  To see us as the expert in our field, as a role we fulfil, not as a spouse.

3.14      Q8:  What effect has the COVID-19 pandemic had on adult social care?

3.15              Utterly devastating, although I do feel now too many services are using COVID as an excuse for poor service and support.

4              Better support for unpaid carers

4.1              Insights and recommendations of third expert by experience on the first question in this aspect of the call:

4.2           Q1:  What, in addition to the support that has already been pledged by the Government, would be the most effective thing that could be done to raise the profile, as well as to improve the identification and support of carers? What examples exist to demonstrate that better identifying and supporting of carers leads to better outcomes for those for whom they care?

4.3           To acknowledge our existence, to pay us a living wage, to support breaks for carers that don’t have to be funded by the person they care for.  “It’s not possible to pour from an empty cup” so if there is no support for carers to rest and to have a tiny modicum of a life, they will continue to burn out and then two people will need state support.


23 May 2022



[1] An NIHR-funded project aiming to strengthen links between evidence and decision-making in Adult Social Care.