Jamie Gault and Chris McCann.

Q115 The Chair: We now move to the second part of our meeting this morning, which will focus on the navigation of care services and so on. Our two expert witnesses for this part of the session are Jamie Gault, from Action for Carers in Surrey, and Chris McCann, from Healthwatch, who are both in different ways heavily engaged with some of the possibilities as well as the frustrations around all this.

My first question is to Chris McCann. In this inquiry so far we have heard a lot about the Care Act 2014 and how it is mostly not working. The Act placed a duty on local authorities to provide information and advice about care and support for individuals with care needs and for carers. To what extent has this duty been fulfilled for younger and older age groups, and with what consequences? We would be very grateful to hear your views.

Chris McCann: Thank you for having us. We know that when social care support is done correctly it can change people’s lives, but sadly not everyone gets the support they need. Our research has highlighted that people do not always understand what social care is, what rights they have, who provides services and who to turn to. About 50% of those requiring support speak to a medical professional first, which obviously places a burden on the primary care service that is already under pressure. For all adults, they look for family members or charities to help, and only 15% are likely to go to the council.

Extensive consequences are that many people begin to look for information about services only once they have reached a limit, which delays them in accessing support. Setting to one side that issues with information at this point can have a massive impact, the ability to access support can have a massive impact on the well-being of potential service users and their carers.

We have done 15 in-depth case studies alongside some quantitative work. We looked at a working mum of two who was also an unpaid carer for both her parents, who lived in different towns, and she felt very isolated and overwhelmed. This was made worse by her finding accessing information, advice and support from the council very difficult indeed. In the end, it took a chance conversation with her hairdresser to find out that she might be entitled to some financial support. Obviously, when there are consequences like this and people are having to find their information through routes like that, it has a massive impact on people.

The Chair: Indeed. We are not all lucky enough to have a hairdresser who can give us that information, so a random encounter is quite alarming. Why do you think the Care Act is not being implemented in the way it was intended? Is there a reason for this other than maybe funding?

Chris McCann: Funding might be part of it, but in the current system too much is expected of the public to find out how services work and to get the right guidance from councils. The White Paper announced a new communications campaign and a new website to explain reforms to the public, and a pilot to provide more personalised social care advice has also been promised, along with a new system to help people compare local providers. We welcome the funding that will go to local organisations to test new ways of providing personalised care and advice about social care, but, as I said, under the current system too much is expected of the public to find out how services work and to get the right guidance from councils and other sources. [Inaudible.]—local authorities to develop services that reach out to individuals with social care needs.

The Chair: Chris, your internet connection is not very stable, so bear with us if we take a little time to follow you. It may improve in the next few minutes.

Lord Polak will now follow up on these questions. I offer my apologies for having to leave the meeting now, but I leave you in the very safe hands of Lady Warwick, who will take over the chair.

Baroness Warwick of Undercliffe took the Chair.

Q116 Lord Polak: I think, Chris, you might have answered part of the question that I was about to ask, although you cut out a little. I am looking at whether the Government’s commitment to improving the information and advice, as made in December 2021, is making a difference. I think I heard you say that the intention was there but that practically it is not happening. Did I hear you correctly?

Chris McCann: We have spoken to the different groups who face different challenges—[Inaudible.]—and people with multiple conditions such as MS, unpaid carers who prioritise the needs of their loved one over their own needs and lives, older and younger carers with complex health and communication needs, and people whose care has broken down following years of support. The social care system should be about supporting people to live the life they want to live, which means potentially—[Inaudible.]—

The Chair: Chris, sorry to interrupt, but we are not hearing you very well. I wonder whether it might be helpful to turn off your video.

Chris McCann: I will go again. We want to be proactive and recognise the difficulties they face. The—[Inaudible.]—that reaches out to and advises them has said that—[Inaudible.]—new ways, because obviously something has to be done. Can you hear me?

Lord Polak: We can hear you now. I think it is better.

Chris McCann: We look forward to working with the Government on their new campaign to highlight more personalised social care advice to make sure that the systems are in place to help people receive and access the care they need.

Lord Polak: Thank you. I was fascinated by the first session, and I notice that Dr Kate Hamblin is here. This is not for her to respond to particularly, but I am connected to an organisation in Israel called Beit Issie Shapiro, which is Israel’s leading developer and provider of innovative therapies and state-of-the-art services across the entire range of disabilities. The key point coming across a lot from you and others was that people who would need to use these technologies were not there at the beginning of the design. I refer to Beit Issie Shapiro so that the committee can take a look at what it is doing as a consultant to the UN in exactly this field, and perhaps our Government might take a leaf out of its book and have some understanding. That was just something I picked up from the previous session. Thank you.

The Chair: Thank you. That is clearly something we could pick up.

Q117 Baroness Eaton: We have heard from you about the complexity of people failing to have knowledge about what is available and so on. What do you think needs to change to ensure that individuals with care needs receive clear and high-quality advice and information to help them navigate the social care system, and what is the organisation or institution whose role it is to implement this change?

Chris McCann: The key thing is that there need to be better information and systems in councils and across providers throughout the entire sector to ensure that the right data is available and that people are providing the information they require.

We have seen many examples of—[Inaudible.]—about the potential of receiving financial support. It was not until later that she found out—[Inaudible.]—conversation had been recorded as a carer’s assessment and would not take it further. The carer was notified and left to worry about her finances. She ended up losing £18,000 a year in income, and the loss of a full-time carer for her mother.

Again, it is about developing proactive information and advice services, which would help in a lot of cases. The implementation of these changes will be required at council level, but councils will need support from government but also from the VCSE sector and organisations like ours at Healthwatch.

The key is using integrated health and care data from all parts of the system, not just the council but housing, benefits, transport, criminal justice, education and so on—[Inaudible.]—with the experience that can be taken from the voluntary sector and the likes of local Healthwatch, so that councils can really understand who might need reaching out to with specific advice and information

Baroness Eaton: I keep missing a lot of what you have to say. Am I right in what I think I have gathered, which is that local authorities should be responsible, and the co-ordinator and the holder of the integrated care data, and they should take the initiative?

Chris McCann: Yes. Local authorities should be almost the convener of the data, but they should be pulling it in from the various elements across and beyond the sector, such as education, the voluntary sector, the criminal justice sector.

Baroness Eaton: Thank you very much.

Q118 Baroness Goudie: Good morning. Individuals who do not normally need to use care because they have not had lifelong care needs are often then in a crisis when they do need assistance because they have no prior knowledge of the care system. To what extent could earlier planning of future care needs help people to navigate the system at the point of need, and how could this be made more available and encouraged?

Chris McCann: This is a difficult one to answer due to the lack of awareness, which exists broadly across the population, about care and what people are entitled to, where the information is and where they can access it. It may be expecting a lot of people to ask them to spend time and resources planning for care that they might never need. Again, this is another benefit of councils having better funded, integrated and proactive information and advice services, because by targeting people you raise awareness of services and reduce the risk of people making decisions while in a crisis.

Of course, you also need easily accessible sources for those with no prior needs, or indicators that might determine future care needs. By having proactive systems and services you can improve demand management, which would free up capacity for those who find themselves in a crisis.

Q119 Lord Laming: Jamie, we were very taken with the fact that you have hospital advisers in five hospitals in Surrey, and I would be grateful if you could share with us how those posts are funded and who is accountable for them. We have heard so much about the difficulties that carers have with hospital discharge and that they are often disregarded, so I assume that hospital advisers are right at the centre of this. Could you share some of your experiences with us, please?

Jamie Gault: Absolutely. If I could take the second part of the question first, which is about the problem, I will then come on to the second part of the question, which is about part of the solution.

In terms of the problem, I would like to reference some key findings from a joint project undertaken by Healthwatch Surrey and Action for Carers Surrey to investigate the experience of discharge to access from the carers’ perspective of those admitted into hospital.

One of the key findings that this uncovered was where the problem is and why carers find it so difficult to navigate the system. Firstly, the problem is underpinned by poor communication between the hospital, particularly the wards, and the carers. Fifty-seven per cent of the carers we interviewed communicated that the communication about the discharge process—in fact, even before that—was poor or very poor.

Secondly, there is the absolutely critical involvement of the carer in the discharge process. We found and identified poor levels of inclusion in the discharge planning. For example, 72% were not asked if they could manage the patient post discharge, with 58% saying that their views were not taken into account.

Finally—this touches on earlier questions in the session—it is about signposting and support available, with 76% saying that they were not signposted to any support at all by the hospital. None of those responses were ones that we did not expect to get.

In terms of the solution, we identified four key recommendations which the five acutes have committed to implementing consistently across their own trusts (these are detailed in the summary findings to be shared with the committee). A key thing, as you have already touched on, was having dedicated hospital carer support advisers in each of the county's five acutes. Their role is to support carers in that hospital setting and to act as the conduit between the carer and health and social care professionals. In the context of this discussion, particularly in relation to hospital discharge, this has proved to be invaluable to the carers we support in helping them to navigate the complexities of the care system.

How is it funded? It is funded by the local authority, Surrey County Council. Who administers it? The hospital carer support advisers are part of our wider adult carer support programme, so we manage it.

If I can make a recommendation, it is that all health and social care commissioners across the United Kingdom should look at commissioning similar services in their county where this provision does not exist, because that important conduit between the carer and the health and social care professionals in the hospital in helping the carer to navigate that system is key to addressing some of those key findings; for example, the poor communication and the poor levels of inclusion.

(NB the survey undertaken by Healthwatch/Action for Carers Surrey, was conducted during the pandemic – at that time, understandably, Hospital Carers Support Advisers were not allowed into hospital settings. Whilst acknowledging there were issue with discharge pre the pandemic, the qualitative and quantitative out turn form the survey, further evidence the value of the HCSA approach)

Lord Laming: That is most informative. Thank you. We have heard a lot of evidence about carers feeling that they have been disregarded in the discharge process. It is almost as if they are considered to be inconsequential or unimportant, as if it is professionals talking about the patient and only about the patient and not about a care package. Am I right in assuming that your experience in Surrey has demonstrated that involving the carers at an early stage is of great benefit to everybody concerned, including the health service?

Jamie Gault: Absolutely. It is critical to involve the carers from the outset of the discharge planning, and critical that their views are taken on board and that they are included in the multidisciplinary teams in the hospital settings, supported by our hospital carer support advisers in the post-discharge planning. That is leading to improvement.

Lord Laming: This will seem a naive question, but, as this is so successful in Surrey and your evidence to us demonstrated that, why do you think it has not been replicated across the country, and what can we do to make sure that this is taken forward?

Jamie Gault: As I have already referenced, where there is no hospital carer support adviser provision in a county, local authorities and/or health or whoever is responsible for the commissioning in that geographic region should look at commissioning a similar service. It would also help with the implementation of the statutory duties defined in the Care Act 2014 if a carer was given parity of esteem. We would be more than happy to share the best practice with those who wish to hear it.

Lord Laming: If there is any information that you would like to share with us by sending us material, we would be delighted to receive it.

Jamie Gault: Off the back of that research, we have produced a carer’s guide to discharge. I have already shared that with Daphne, and she will pass that on, together with an executive summary of the findings from the survey I referenced earlier.

Q120 Lord Laming: The Lord Bishop of Carlisle cannot be with us, so I have been asked to put his question. He is very interested in the role of peer support and peer groups, and in the wider involvement in what might be thought of as a community response to people with needs. I wondered if you have any thoughts on that that could help us.

Jamie Gault: Very much so, particularly on peer support, which I will cover first. I will then talk about peer-led organisations.

Isolation has a significant detrimental effect on carers’ mental health and emotional well-being. A recent state-of-caring report by our colleagues at Carers UK highlighted that 34% of carers reported that they often or always felt lonely. That was compounded by the pandemic, understandably.

In our organisation’s experience, peer support among carers is vital. It allows carers to realise that they are not alone and that others are in a similar situation. That allows them to connect and to share their stories, tips and coping mechanisms and, of course, to bond with other carers and, in many instances, form friendships. This approach has proved to be very successful and, most importantly, valuable to the carers we support.

The groups that we run—I came in on the back end of the last conversation—are facilitated through a blended approach. We do face-to-face groups now that the restrictions have been lifted, but during the pandemic we have also become very proficient at delivering groups virtually, which helps carers who live in very rural areas or who are unable to leave the person they are caring for to attend. That has managed to expand our reach and impact quite significantly.

Lord Laming: It is good to have such a positive contribution, because some of the evidence we have heard, as you will understand, has been rather depressing and concerning. It is splendid to have a very good example of carer-orientated, carer-sensitive work. Well done. Thank you very much.

Jamie Gault: The second part of the Lord Bishop’s question was about carer-led organisations. Our particular organisation is a carer-centric organisation. It puts carers at the centre of all that we do. It is important that organisations across the country follow this model of being carer-led. For example, 60% of our board of trustees and over one-third of our employees are carers. They have a detailed understanding of the landscape and the challenges that carers face on their journey.

Importantly, we also provide a number of mechanisms to allow carers to be heard—for example, surveys, feedback forms and forums. We allow them to be heard, because it helps to influence policy at a national level. We have recently had conversations about the White Paper with Jeremy Hunt, chair of the House of Commons Health and Social Care Committee. We have contributed to this panel too, but also at a local level and to influence service provision to ask the carers what they need and where they identify gaps in the provision.

The second part of Lord Bishop’s question was: how can these organisations be expanded or maybe even put in place where they do not exist? My first comment would be that the pandemic created a perfect storm. Demand for the support for carers understandably rose significantly, but, compounding that, the complexity of cases also rose and there were challenges over funding.

If I may be a little cheeky, the answer is to increase funding for organisations like ours across the country, because that is how they will be able to expand their reach and impact at a time when carers need it more than ever.

Lord Laming: We do not regard that as cheeky at all. I would regard that as very constructive. Thank you, and we wish you continued success in the important work that you are doing.

Q121 The Chair: We have reached the end of our questions, but I wonder, Jamie, whether I could, perhaps equally cheekily, ask you to follow up on one question where you talked about solutions being scaled up and how proud you were of your project. It is so difficult, because we have come across this problem of scaling up in relation to a lot of very good practice. Are there barriers? Is there a problem not invented here that is restricting the take-up of good practice like this, because every local authority has this responsibility? What is the solution to this?

Jamie Gault: Part of the solution is out there—we are just one example, but there will be others; there is a lot of best practice—but part of the problem is not that there is a reluctance to share that best practice; we are very keen to share it, and I know other organisations are. Part of the issue is probably the lack of a platform or a mechanism to enable and facilitate that sharing of best practice across other authorities. There is a lot out there, but it is disparate and disjointed, and we need to bring it together so that other local authorities can access that best practice and finesse it a little for their own local geography, but then implement it effectively. The issue is a platform to share best practice effectively.

The Chair: Inventing new organisations is not always terribly helpful. Is there an existing organisation or body that could act as that platform—directors of social services, for example?

Jamie Gault: Absolutely. It might even be possible through ADASS, I am not sure. That could be one of the platforms in which to share the practice.

The Chair: Thank you very much. We have reached the end of this session. I thank Jamie Gault and Chris McCann for their very helpful evidence. The challenges of navigation and transition have come up at every stage in our inquiry, and it is one of those very difficult areas where finding a good solution, and finding a way to transmit it, would be enormously helpful. You have both helped us to understand that. Thank you both very much.

Chris, the sound was quite difficult for part of your evidence, so if you made any notes in order to prepare for this session, if you want to send them to us, that would be very helpful.

Chris McCann: Absolutely. I would be delighted to send you written answers in case anything was missed out. If there are any follow-ups that we were not able to cover because of the technical issues, we will be happy to follow up on those.

The Chair: Thank you very much. I am sure we will want to follow up with both of you. You have provided us with some enormously helpful information. Thank you to everybody.

Dr Kate Hamblin: I have a point to make about the platform. If Jon Glasby were here, I am sure he would talk about a relatively new endeavour there, the impact implementation centre funded by the ESRC and the Health Foundation, which is about mobilising evidence, including best practice, to make change in adult social care. It is that piece of work that potentially speaks to that point.

The Chair: Thank you, Kate, that is very helpful, and we will follow that up. Thank you, all.