12
Examination of witnesses
Rohati Chapman and Dan Gower-Smith.
Q73 The Chair: We now move to the second part of our evidence. I invite Rohati Chapman, executive director of programmes and impact at the Carers Trust, and Dan Gower-Smith, group director of operations at Avenues Group, to join us.
The emphasis in this last session is essentially on delivery. It is about how we get best practice and get it scaled up, and some of the experience that you have in finding solutions that can be universalised.
I will start with a fairly basic question to Rohati. As you will know, many of the carers who we have spoken to—and it has been reinforced again today—are carers who have said, when they interact with the health and social care systems, that they are not actually recognised for the skills, knowledge and expertise that they have, not only for the person they are caring for and what they need and aspire to but the system as a whole. Sometimes there is a heavy sigh when they come into the room rather than a warm embrace, and they are made to feel that they are part of the problem rather than the solution.
Do you think that is a fair comment? Is that a fair generalisation? Is it reflective of the carers’ experience in your experience generally? What do you think is the root cause that explains that difficulty in establishing a positive relationship between formal care and unpaid carers? Rohati, what do you think about all that?
Rohati Chapman: Thank you for that question, and for the invitation to Carers Trust to speak today. Fatima, I really enjoyed your evidence just now. It really resonated and I would like your book, please.
The committee has already received a swathe of excellent oral evidence from champions of unpaid carers and carers themselves, not least my two colleagues previously to this session, but also Nadia Taylor of Carers Network, one of the local carer organisations that is a member of Carers Trust Network.
The overall gist of the evidence is that the implementation of the Care Act, supporting unpaid carers, is not working well for myriad reasons. As a result, the experience of carers generally tends to be out of sight, out of mind, out of pocket—in other words, invisible. In direct response to your question, “Is it reflective of experience of carers generally?”, I would say yes.
Despite being first responders to a developing crisis, unpaid carers, by which I mean anyone who cares unpaid for friend or family who could not cope without their support, are not recognised as co-workers, for want of a better phrase, in the delivery of care support, in which case they very much are.
You also asked whether this is reflective of what we hear in our Carers Trust Network. What we hear among our network of local carer organisations time and time again is that carers are excluded at multiple points of the care pathway; they are not listened to or informed of important information they require to help them support the person they care for; they are not informed of support for themselves. Professionals, therefore, miss out on vital information that can inform treatment and care, which can be detrimental to service user or patient outcomes.
Given all this and the current pressures on health and social care funding, our formal care systems increasingly rely on unpaid carers as a safety net without due regard to their safety net. We cannot afford to have this situation continue any longer. We know there is sophisticated modelling in predicting demand, but we know the change is not there. We know that more is needed, a culture change is needed, and that is where Triangle of Care comes in.
There are a number of root causes for the failure to establish a positive relationship. It stems from lots of things—from time and resource pressures mainly that influences the prevailing culture. Starting from the beginning, and we have heard this from a number of testimonies, the lack of professionals’ awareness maintains this status quo and this culture. As a result, confidentiality is often regularly presented as a barrier to engaging carers. Carers will feel as though they cannot share information and it will not be taken seriously. This damages trust and perpetuates unpaid carers’ invisibility.
We know that health and social care systems operate around service user or patient consent. If that is not provided, it is understandable that staff often feel uncomfortable engaging carers for fear of breaching GDPR. But there is a solution to this. There needs to be a culture shift of consistently engaging carers with common-sense confidentiality practice, and Triangle of Care addresses this. Confidentiality policies and protocols to involve carers is a key standard in the Triangle of Care. Accredited mental health trusts that have achieved the standards to become accredited have put their confidentiality policies and protocols under the microscope and come up with some really accessible, common-sense confidentiality toolkits. We have examples of how this is done and I can include that in our written submission.
Overall, in addressing the root causes of failure, there is a need for fundamental acknowledgement of the role of unpaid carers across the care pathway and understanding and recognising their expertise in achieving positive outcomes for service users.
The Chair: Thank you, Rohati. On the last point, what is the best and most effective way—and, frankly, the quickest way—to change the culture? Is it through the social work curriculum? Is it through professional development?
Secondly, what would the Care Act 2014 look like if it were working? What is not working? We have heard this many times in the committee already. These two questions may not be related, but, hopefully, if they were both better done, we would end up in a better place for the same reasons. Can you take the training and culture change first?
Rohati Chapman: I will try to give a brief answer, and anything I cannot answer today I will write to you. Unfortunately, I am going to say that there is no quickest way. We have learned from over 12 years’ implementation of Triangle of Care that it takes time; there is no quick fix. It is absolutely about integrating it into front-line staff curriculum, leadership training, all sorts of policies and protocols, but that is not easy; that is not a quick fix. The answer is to be mindful that, once committing to this, you are committing to the long run, the long game. If you want to achieve and progress towards that, take a pacier shortcut, for want of a better phrase, you need to ensure that you have that absolute senior leadership and broad-level buy-in, making care engagement a strategic priority. Notwithstanding that, there is no quick fix.
As to what is not working and what the Care Act would look like if it was, that would require a longer answer. However, I would like to say today that we hear time and time again from our network, and I am sure you have heard it as well in your evidence sessions, that the heart of the intent in the Care Act is there, but the problem is the implementation. That often stems back, I am very sorry to say, to funding: funding for social care, funding for health, funding that goes to unpaid carers as welfare and benefits, and the local infrastructure that supports them. Our Carers Trust Network consists of over 120 local carer organisations that are also independent charities, which are also struggling with funding in the current context.
If the Care Act was working, it would be looking at the infrastructure and the funding and making sure that it could actually get the money to the places, the unpaid carers and the local carer organisations who need it.
The Chair: May I ask you to write to us about that? We really need to understand how much of this is a failure of implementation, how much of it is a failure of design, how much a failure of delivery, if so, and so on. I know that is more homework and I know you are very busy, but anything you could do to illuminate that would be really helpful for us.
Rohati Chapman: It would be a pleasure to.
Q74 Baroness Warwick of Undercliffe: Thank you very much indeed for that response, Rohati. It is very clear and it was good to know the experience of the Triangle of Care that you have been involved in. So many surveys have told us that carers want to see a collaborative approach to care and to be seen as partners in care. I think you have reiterated that, and so have most of our other witnesses.
None of this is new to healthcare professionals, is it? It is just perhaps part of what you called culture change and the need for culture change. What very practical changes could be implemented by health and care organisations to develop the kind of Triangle of Care that you are talking about? In a way, it is not necessarily resource-driven at all. It is about attitudes; it is certainly about leadership in the organisation, as you have indicated. At the same time, it is also about how you change the approach of those professionals to see carers—you talk about their invisibility—as people who could add value to the work they are doing. Could you give us any examples of that kind of best practice in the implementation of Carers Trust Triangle of Care?
One very specific question, which I know we indicated to you, is: why has the Triangle of Care’s implementation been confined largely to mental health trusts? That was an interesting dimension to it. If you could cover the first part first, that would be really good.
Rohati Chapman: Yes, absolutely. Thank you for that great question. There are solutions there. You heard some from Fatima earlier. There are lots of practical changes that health and care organisations can make. As I said earlier, it requires time, commitment and senior leadership buy-in to build the relationships and understanding between carers and professionals and service users or patients. It is the triangle. The Triangle of Care has the potential to be a powerful lever to make the formal care system more equitable for unpaid carers.
The learnings from the Triangle of Care that I would like to speak about today relate to the Triangle of Care programme that was developed back in 2010 by Alan Worthington OBE, an unpaid carer himself. It is an improvement programme managed by Carers Trust in partnership with NHS mental health trusts and it is an entirely voluntary improvement programme that has been co-produced by carers. At its heart, it is absolutely to seek that cultural shift to help organisations improve their care engagement across the care pathways. It is currently actively implemented in around 35 NHS mental health trusts out of 54, but Carers Trust has plans to bring Triangle of Care to new audiences this year.
What do the actual practical changes look like? They revolve around six key standards that are crucial in achieving the therapeutic alliance between carer, service user and professional. We can provide more detail in the written submission but I will share with you what those six standards are.
The first is carers. The role they play should be identified at first contact with services or as soon as possible thereafter.
The second is that staff should be aware of carers and trained to engage with carers more effectively, obviously using training that is co-produced with carers.
Thirdly, confidentiality policy and protocols, which I have cited as being a key barrier to developing positive relationship, should be scrutinised, revised and put in place across care pathways to enable information sharing with carers.
Fourthly, defined roles and responsibilities for carers should be in place across care pathways, and they should be integrated with clinicians. The carer leads that we see in our Triangle of Care accredited trusts are not necessarily clinicians themselves, but they work very closely with clinicians; there is no poor cousin in implementation of Triangle of Care.
Fifthly, carers should be introduced to the service and provided with a range of information. It should not be a mystery for them; they should not have to figure it out for themselves.
Sixthly, a range of carer support services should be available to offer or signpost carers to support their needs.
I would just like to share a quote from a carer in a lessons learned report that Carers Trust commissioned the McPin Foundation to conduct in 2019: “The six standards gave a consistent, useful and meaningful framework that was shared by both carers and staff. The work to embed this across teams helped carers to have a stronger voice and be more visible in the organisation”.
What I am trying to say is that most carers recognise that a three-way partnership is the best shot at creating the best chance of recovery for a person drawing down on care. Carers wish to be trusted, involved and become more effective in their support for the patients’ recovery.
Triangle of Care is not a one-off pass or fail; it is a programme where you graduate from one star to three stars. It is a self-assessment tool that is scrutinised by carers as part of the submission process. A peer review is also part of it. Throughout your annual progress report, you are required to articulate how you are making progress—how you are achieving improved care engagement across the entire carer pathway. Before I move on to why it is confined to mental health trusts, we have a variety of best practice examples that have surfaced through our rigorous accreditation process. I can include more of this in our written submission, but I want to share a couple with you that might bring it to life.
In terms of carer awareness training, all of Central and North West London NHS Foundation Trust’s training is co-produced with carers. It is provided to all teams, including newly qualified staff, and included as part of their preceptorship. It is included in wider leadership training and it will also be included in the grand rounds for doctors. Also, Lincolnshire Partnership NHS Foundation Trust has a rolling programme to train staff to deliver family therapy and it has a carers’ council that feeds directly into the board. That is carer awareness training.
As to defined roles to support carers, Somerset Partnership NHS Foundation Trust is a good example. It has multiple carer champions across its wards and holds regular carer champion peer support days, which provide an opportunity to problem solve, share good practice and accelerate the embedding of that culture change as well as providing champions with training and personal development. They are just some examples.
Confined to mental health trusts, it started in the mental health sector because the founder’s expertise and experience is in the mental health sector; it is based on lived experience. We have not ventured further from the mental health sector for a variety of reasons, mainly resources. Also, it goes without saying that the need is still massive and the work is not yet done; we are not engaging with all the mental health trusts. We also have exploratory conversations with private sector mental health providers that are really interested in being made accountable through Triangle of Care.
We have some examples where our accredited trusts have cascaded Triangle of Care into more community settings, but it is limited and it is something that we want to explore further. The example that I want to give is Kent community hospitals. It was recently accredited. The early successes included very much the same indicators as within the mental health trusts themselves—secondment of a ward matron, recruitment of a network of carer champions and discharge volunteers. I will speak about that in answer to a further question.
I would like to land with the committee today that Triangle of Care has started off in the mental health sector because of the need. It has immense potential for adaptation beyond the mental health sector, but it will require a number of reasons and a number of factors to support that. It will need resource support and endorsement from multiple stakeholders, but we have over 12 years’ worth of excellent experience and best practice to be able to adapt elsewhere.
Baroness Warwick of Undercliffe: Thank you very much indeed for that very comprehensive answer. It would be great if you have monitoring processes in place, because I can see those sorts of outcomes being enormously useful to persuade others that this is a good path to go down. Perhaps you could let us know that as well, if that is okay, and keep us informed as to how they are performing.
Q75 Lord Laming: Thank you, Rohati, for that very helpful information. I have just two quick questions, if I may, please. First, it has been put to us that carers are often distressed by suddenly having caring responsibilities thrust on them—for example, when somebody is unexpectedly discharged from hospital with special needs. We are very grateful for your experience with that. Secondly, could you enlarge on an answer you gave earlier to the question of patient confidentiality? It has been put to us that carers often do not have the information that they need because they are told that because of patient confidentiality that information cannot be passed on to them. Your help with both of those would be most welcome. Thank you.
Rohati Chapman: Sure. Thank you for that question. Unpaid carers and their role in hospital discharge is a very heated topic, and it continues to be. I would like to acknowledge the role that Peers have had recently in the Health and Care Bill in supporting the retention of legislative rights of carers in the hospital discharge planning process rather than after the fact. Regardless of what the legislation says, good practice in involving carers in hospital discharge is not widespread enough. We hear a lot of it from our network members.
In terms of the applicability of Triangle of Care lessons, a discharge from a mental health setting is somewhat different from a hospital discharge. It is something that we are still exploring in our standard for care involvement at all stages of care. Our premise is that an organisation committed to Triangle of Care standards and committed to deepening care engagement across care pathways is more likely to create the culture and processes to get that hospital discharge right. A good example is the Kent community hospital accreditation, where there were voluntary discharge champions, volunteers, who are in the process of being recruited, are going to support community hospitals with the discharge process, and therefore create an opportunity to undertake patient and carer surveys to increase feedback and ensure that all family carers, or friend carers, are in receipt of a carers pack with further information.
I have another example, which is not through Triangle of Care but another carer organisation. Action for Carers in Surrey has established hospital advisers who are not clinicians but are co-located in hospitals. They bridge the communication gaps between care and hospital, offering the full range of information, advice and guidance, including emotional support, and they also link carers with community-based support from local carer organisations.
On confidentiality, we want to explore more practice around seeing it come through at hospital discharge partly because we do not have enough examples of trusts that are really working excellently with their confidentiality policies and protocols. We have examples of those who have started on their journey, but I would very much like to follow that through and see whether, on your question about confidentiality, there is a relationship between a trust getting that right and that being reflected in a hospital discharge process.
I am not sure I have quite answered your question, but there is more work, evaluation and focus needed in this area. We know that research says that, when carers are supported and educated, there can be a 40% reduction in relapse and re-admission, a hugely positive outcome for patients. On a case-by-case basis in terms of Triangle of Care, I have seen positive survey returns on outcomes for carers, but we want to do a little more work on an outcome evaluation in due course, and we would like to contribute further statistics here.
Lord Laming: That is most helpful. Thank you very much indeed. As you realise, we are interested in finding ways in which carers might be empowered and might be seen as an essential part of the process rather than just being an add-on. So if there is anything that you can help us with when you write to us, that would be most welcome. I am very grateful to you.
The Chair: Our focus now switches to Dan. Dan, your microphone is slightly unstable, but let us start and see how we get on.
Q76 Baroness Campbell of Surbiton: Dan, if this is not clear, please let me know. I want to talk to you about fostering better relationships with carers, the staff and the people whom they care for. You have been very much involved in what I call a partnership approach and fostering better relationships. That means being able to deal with complex and challenging situations—for example, when staff, carers’ views and the views of the person who draws on care differ when they are making care decisions. Often, this sort of tripartite relationship is difficult to navigate.
What do you think your organisation wants on the table as a constructive way of addressing those tensions? For instance, how can staff be trained to navigate those kinds of situations? Is any facilitation training required trying to break down the “them and us” syndrome? If you could give us any examples of what has worked, I would be really grateful.
Dan Gower-Smith: Brilliant, thank you. Apologies, my internet connection was not very stable to begin with, but I heard most of that question. [Inaudible.]—to remind me at the end.
Baroness Campbell of Surbiton: Dan, you are really breaking up.
Dan Gower-Smith: Apologies, it has been fine up until now. I was saying that it starts with the person. That is the bit that adult social care and all of us need to remember. It is about the individual. We must start with the person and have that all the way through.
I will go back a few steps. We heard earlier about the organisation’s strategy. It should be a culture within the organisation that paid and unpaid carers are fundamental to delivering good support and recognising those individuals. It should be part of the organisation’s culture. It should be in the values. For organisations such as Avenues, it is part of our strategy to make sure that we increase family connections. We have a charter in place that we can refer to so that the staff understand the importance of all the family members in the individual’s life.
You touched on challenges. Of course, when you have differences of opinion, there will be challenges, but an organisation can prepare its leadership team to be open and honest, build up the trust and have a values-based approach to delivering services, whoever is delivering that service, and have a service that is around the individual, which includes social care providers, paid carers, unpaid carers and, often, the health system.
In our organisation, we use the legal framework. I know we have heard about the Care Act in previous evidence. That is there to support people and make sure that those who are having those conversations understand the Care Act and the Mental Capacity Act. We must include all those parts in our conversations, starting off with being open and honest. To build trust, you need to be open and honest with people, and that starts right at the very beginning of when people receive a service.
In our organisation, as part of the assessment process we ensure that we include as many people as the person who is receiving the service wants because we need to hear their views. We are not the experts. That is key too: remembering that we as paid carers do not know all the answers. One should consider that, often, for the people we support, the families have been carers of their loved ones for many years before they have come to an adult social care service and probably know all the things about the individual. We heard earlier about how someone communicates. It is key to understand that. We heard about when they take their medication and things like that. Those unpaid carers will know their individuals really well. It is about including people in that and not expecting us as the paid carers to be the experts.
We as an organisation recognise that, and that is why we have worked with Skills for Care to have a framework. We did some research and developed some best practice which, if organisations follow, we think will enable better and stronger person-centred care right from day one. I would say that key to the delivery of that is training—making sure that our managers and support staff are trained, and that we have practice leadership from all levels of management within the organisation, fostering and showing that unpaid carers are also important in delivering services to the people we support.
Does that answer the question? Apologies, but I missed the first part of it.
Baroness Campbell of Surbiton: Dan, that was very good, but could you bring your training alive? A lot of people talk about course delivering person-centred practice and monitoring. How do you actually go about that? Can you begin to change the mindset of those who will work in that situation with carers and those they care for? I would like to get a feel for how you do it—a tangible feel for those courses.
Dan Gower-Smith: Thank you. It is before the training. It is also about the recruitment. If you have the values-based recruitment, your organisation attracts the right people. Yes, you can train people to provide practical support, but actually we are talking about values and behaviours. What we want to do, and what all organisations should do, is attract the right people from the beginning. That is the values.
Training and personal development are really important, but I do not think that we can offer an individual just one course. It starts with your induction. It starts with all the different parts of the course you offer—person-centred care, person-centred planning, active support, and involving families in that. You have the formal personal development in those training courses, but we often involve families in learning how to support their individuals. They will be part of the co-delivery of training to the support staff. They know what works really well and they will share that skill with the paid staff.
We will make sure that written support plans reflect that as well so that there is a guide to go back to when the families are not there, to make sure that the care staff can deliver that in the same way as the family membership. Why should someone receiving a service learn to be supported by seven or eight, or even bigger, staff teams? The care teams should learn how the individual wants to be supported.
Baroness Campbell of Surbiton: Thank you very much, Dan. You have given a very good example of what we call co-production.
Q77 Baroness Eaton: Hello, Dan. One of the regularly emerging themes during our discussions with carers is the lack of effective communication with the formal care services. What should good communications between care workers, carers and the care receivers look like, and what changes can organisations implement to achieve that?
Dan Gower-Smith: There is no simple answer to that, because my point is that the communication is delivered in a wide way that—
Baroness Eaton: Sorry, you are disappearing again. I like looking at you, but I would like to hear you more.
Dan Gower-Smith: I will keep my camera off. Apologies, Chair. I hope that stabilises the line. There is no simple answer, because the communication should be delivered in a way that achieves the best outcomes for the individual who is receiving the service. You should agree very early on with the individual how they want to involve everyone who is important to them—family and friends—and then agree with those individuals how it is going to happen. Unfortunately, we hear too often that the paid carers are only contacted at the 11th hour or when things are not going well.
We have to balance the great outcomes as well. In our organisation, we talk about things like “smile moments”, so that they can share with the individuals and their families what they have been doing. We do not want to have communication that is always one-way and negative. It has to be open and honest, it has to be regular, and it has to be what the person wants to share. We have heard in previous evidence about various legislation and GDPR but in a way that creates and fosters a relationship that builds trust. We know that families, from our perspective, trust our organisation and paid care staff to provide support to the most valuable member of their family, people they have supported for a long time and who they are asking us to support. We have to make sure, as good service providers, that they are still included and that communication is not a barrier.
We have learned over the last two years with the pandemic that communication does not always have to be a letter now; it does not have to be a phone call. Today is a good example; you can use technology to make sure that families feel connected. Videos can be made. We can use things like WhatsApp calling. I would say push the boundaries of communication. It is not always a pen and paper. That is a good example of organisations connecting the people who are receiving a service and their wider circle of friends and family.
Baroness Eaton: Thank you. Perhaps sometimes, the person receiving the care also needs to be given the confidence to know that that is an option for them, and they are not just being referred to by the services themselves. Sometimes that is quite difficult. How do you think we can help the person receiving care to be confident enough to push out the boundaries for the rest of the family and the carers?
Dan Gower-Smith: It starts from the values part of the organisation when you introduce your organisation or the people who are going to be supporting them and telling them that that is an option. It should be made very clear that the organisation providing the support is not the only solution, and that they will find ways to work with their extended friends and family.
As I said at the start about the values, we as an organisation are not the experts on our own in this objective. It was great to hear about the triangle of support. Very similar to the framework that we developed with Skills for Care, it is looking around and at the whole picture. I guess the biggest challenge—we talked about challenges earlier—is aligning the health and social care so that it is not two separate pillars: that we are together as health and social care.
We often hear that families have to tell their stories lots and lots of times to different professionals. It is not just about one care record; it is about the whole story. People who receive services either throughout their whole life or in an emergency go through many assessments and get asked the same questions time and time again. I know how I would feel if I had to keep repeating my story. I will find it very difficult if I am a carer who has always cared for my family member and then I have had to stop providing that care for whatever reason. You have to remember that there is guilt there too. If we can overcome that challenge by having one record so that people do not need to keep telling their own story, that would be an amazing outcome. Having organisations that truly value the whole individual, the staff, unpaid staff, and health and social care would be great.
Baroness Eaton: Thank you.
The Chair: Our last, but by no means least, question today is from Baroness Barker.
Q78 Baroness Barker: Hi, Dan. It is quite clear that a partnership between care workers and carers, or a partnership between the NHS and social care—or, dare I say, even a partnership between different parts of the NHS—is not going to happen without leadership. Leadership and accountability seem to me to be the two issues that are missing. I have yet to hear anybody losing their job because carers were not taken into consideration at an appropriate time and in an appropriate way. How can that lack of leadership be dealt with and addressed?
Dan Gower-Smith: You are right: the starting point is the top of the organisation. Directors, leaders, trustees and board members should understand the importance of recognising all the stakeholders in delivering good services to individuals. I would expect to see it in values, I would expect to see it in mission statements, and I would expect to see it in organisational strategies about how they are involving individuals.
How can we overcome that and make sure it happens? The Care Quality Commission under “well led” has a role to play here, in that it is a regulator that comes into services and looks at “well led” and gives providers a rating. If you have very clear expectations and a range of practices that are recognised as being required, our regulators will go into services and measure that on our behalf or other people’s behalf. That is the way we will change cultures and challenge bad practice. We should expect a higher standard and we should use our regulators to be the people who help us to achieve that.
I say it again. It comes back to the expectation that all levels of an organisation receive good induction and good training regardless of their function in the organisation. A finance department must understand that it is key in what it does for the outcomes of the people who receive it. If you receive invoices that are wrong or are not on time, which causes stress to families, that is just as important as the funding for social care service delivery.
Baroness Barker: Thank you very much.
The Chair: We have come to the end of the session. Can I thank both Dan and Rohati on behalf of everyone for the quality of their responses today and for the depth, the experience and the insights that they have shared with us? Overall, it has been a remarkable session and we are very grateful indeed.
I have to say that you make me very optimistic that there are opportunities for change, there are ways to change, and there are things that can be done because they are already being done and they are showing the way, and that is marvellous for us to hear.
May I thank you very warmly indeed? Please feel free to stay in touch and to give us any other information you have or you think we should have access to. We hope that we will be able to produce the sort of report that you feel you have had a genuine share and opportunity to contribute to. With that, I declare that the meeting is now closed and say good-bye for the afternoon. Thank you very much indeed.
