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Brain injury case management

Litigation, trust and teamwork

The role of a case manager and deputy in supporting families after life-changing injury

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From the earliest stages of a claim to settlement and beyond, the relationship between a client and their family with their deputy and case manager – as well as the trust between a case manager and deputy – are crucial components in empowering people to rebuild their lives and look to the future. 

Dr Shabnam Berry-Khan, MD, clinical psychologist, Advanced BABICM case manager and founding director of PsychWorks Associates, and Tom Hall, partner and national head of the Court of Protection department at law firm Hugh James, discuss the importance of strong and trusting relationships

 

After life-changing injury, lives of whole families will never be quite the same. This can be an enormously difficult process of adjustment and acceptance for them, as they adjust to the new dynamics at play in their lives and learn to accommodate the involvement of a team of professionals committed to supporting them during their rehabilitation journey and beyond.  

The role of a deputy – appointed by the Court of Protection to safeguard the client and their best interests, which is governed by the terms of the Mental Capacity Act and a client’s capacity to make decisions for themselves – and that of the case manager – whose role revolves around co-ordinating the multi-disciplinary team while ensuring the client is kept at the heart of everything – are vital to this. 

Both the deputy and case manager essentially ‘tag team’ from the day they are appointed, ensuring the client is empowered as much as possible, while also guiding and supporting the client and their family through what can be a totally unknown process. The reality is that the vast majority of people will not have encountered a deputy or case manager before serious injury impacts their lives; they may not even have heard these terms before. 

Ensuring our client’s genuine needs are met is paramount, but many factors are at play in achieving this ultimate goal – building a trusting relationship with the family, creating the multi-disciplinary team that works for them, ensuring the eventual settlement covers the client’s needs and accommodates their wishes, and potentially overcoming challenges along the way that can arise in the relationship.

It is not always plain sailing and sometimes can be a rocky road – but investing the time and commitment in the relationship with the client in order to achieve the best possible outcomes, is your absolute priority, and is key to the development of a successful dynamic which can see you working together for many years, potentially the rest of their lives. 

Here, we offer some insight into achieving that collaborative way of working, with effective communication, interdisciplinary thinking and trust being at the root of everything. 

The introduction to the client and their family

Investing time in building the relationship from the very earliest stage can be fundamental to the longevity and success of working with the client and their family. 

Having arrived in their lives during probably some of the most challenging times they will ever have faced, there is a need to earn their trust – and this begins from that very first meeting, and unless exceptional circumstances prevent this, this should always be in person. 

Dr Shabnam Berry-Khan

“This is the beginning of a journey with the client, and it’s a big investment that we’re making in terms of us working together for the long term, so the need to physically show up, to see things from their side, is so important here,” says Shabnam. 

“Through physically being there, that’s a very important non-verbal communication in itself, you’re showing the client is valuable and important as a human, not just in terms of a client in a case. 

“And from there, being there in person and seeing the dynamics at play, you can learn so much more. The listening and observing can give so much more insight into a client’s life – so what happens when the kids are running around, the dog is barking, the reality of chaotic life is going on. How is that affecting the client, what do we need to know there? These are all things you could never pick up on a screen.

“We know that clients and family members typically experience some level of trauma after what they have been through, and trauma can significantly impair processing – so being trauma-informed and being there, in their space and in their shoes, can be invaluable, really.”

“It is such a personal relationship we are creating, and you can be more authentic in person than on a screen,” says Tom. 

“Often it can be the case that you’ll learn more about the client while they’re giving you a tour of their house and you’re just chatting, than you will learn when you’re sitting down meeting them and their family in a more structured meeting. People can feel more comfortable in that situation, it’s more natural. 

“And in that initial meeting, or very early meetings, we need to keep in mind that this situation is all very new and it’s going to take time for them to get used to this. Reassuring them from the start is so important, and trying to keep it high level so we don’t go into too much unnecessary detail at that stage. We have to start from the very beginning and remember that often less is more. 

“Planning is key in the early meetings, prioritising what we need to get across today and distilling that down. And of course it’s very dependent on the individual client and family exactly what that meeting will look like, it can vary greatly between each situation. But it’s about taking your time and keeping your client as the priority in this.”

Establishing ground rules from the earliest stages is also crucial in the development of a relationship, for both the client and professionals, says Shabnam. 

“This can be particularly helpful for our brain injured clients, those overwhelmed by the trauma of the injury, or those who have incredibly busy rehabilitation and care programmes in place, so they don’t have to hold all  in mind nor have to process everything in the moment” she says. 

“The ground rules can be a document for them to refer back to help govern the relationship, which we co-create to include legal and funding obligations as well as personal preferences  to give the relationship the best chance of thriving. It isn’t set in stone and can be revisited throughout, but it can be a valuable reference point. 

“For some clients, it can work incredibly well. We can have some clients who will refer to the ground rules and request to tweak or put on hold certain parts. 

“It can become a negotiation, so client and professional can come up with a framework to navigate an outcome that ultimately they are happier with.”

Establishing the multi-disciplinary team

When an interim payment is received, the MDT can then be put in place – a process which is fundamental to the long-term rehabilitation of the client, so the assembly of the most effective team for their bespoke needs is crucial. 

“As case manager, we try and offer at least three options per therapist, which comes as a result of our search and analysis of fit the service – so their rates, anything about their T&Cs that are noteworthy, their location, specialisms, time capacity to undertake the full breadth of work like liaison and meetings too – we will set this all out to the client,” says Shabnam. 

“We only work with registered professionals because we only put our clients in the safest hands that we can possibly find. 

“And we try to be creative with the mechanisms through which the therapy can be delivered, thinking about the resources available to the client and cost-effectivity. It may well be that the client likes a certain therapist, but they can’t be seen more than, say, once a month, so it’s not certain how much progress they are going to make. Yet if there is a really good care team in place through the interim payments, this  may in fact  enable a therapist the client prefers to engage with to come once a month and still be effective.

“If we are concerned about client choice after some discussion, we will speak to the deputy and share our thoughts. But we can always review the situation further down the line, as we always want to support the client’s wishes wherever we can.”

As the party in charge of the interim payment, and responsible for funding provision for the rest of the client’s life, the recruitment of the MDT must be approved by the deputy. 

“It’s almost like the assembly of a small business, we need to invest funds and consider financial sustainabilitywe need to think about tax and contracts, the employment of therapists to deliver services, and hold that all together,” says Tom. 

“We’ll do some due diligence on the therapists, and also be guided very much by the case manager, whose expertise lies in this field, but the client’s views are hugely important. 

“We will go back to the Mental Capacity Act and consider whether a client has capacity to make their own decisions – if they do, then it’s completely up to them. If they lack capacity, then we will work out what is in their best interests, while also looking at their wishes and those of their family, which do carry a lot of weight.”

But from the moment the MDT is assembled, the deputy and case manager then work closely in ensuring funds from the interim payment are appropriately managed and balanced to cover the costs to ensure continuity of care. 

“While you’re given a tranche of money, this is not the final compensation award and you don’t know for definite how long it needs to last,” says Tom. 

“It may well be you’ve got, for example, £150,000 and that needs to last for the next 12 months. But the danger is that if you don’t get this right, or don’t have the right collaboration between deputy and case manager, then this money might run out after six months. 

“Then you have the situation that while there might have been a wonderful care package in place and the team is absolutely brilliant, the client suddenly has the carpet pulled from beneath them. Which is the absolute worst case scenario. 

“So we need to scrutinise and build a budget very carefully and try as hard as we can to stick to it to avoid this situation happening. Collaboration with the case manager – the professional on the ground, overseeing all – is absolutely key to this happening, because as a deputy sat in an office, I have no clinical expertise, I don’t know whether to prioritise psychology over OT or vice versa. 

“This is where close working and communication between the case manager and deputy is vital.”

Post-settlement planning 

Once the settlement is secured, this will take care of the client’s lifelong needs in terms of care, therapies, accommodation and equipment. 

But while it may be a significant sum, it must cover the client’s needs for the rest of their life, so careful long-term planning is needed around how this will work. 

As the culmination of the litigation process, and, for many families, the milestone at which they feel they can look to the future, securing the settlement can give rise to many emotions – and often challenges too. 

“While the claim has concluded, it is still not the situation anyone would have wanted. The lifelong consequences of the injury still exist, but we are now trying our best to secure the best possible outcomes,” says Tom. 

“When we have the post-settlement discussion, often a client will express their wishes and preferences, and it can sometimes be quite a bumpy time for the professionals involved for perhaps six to 12 months afterwards. 

“Families may not feel they need or want a case manager anymore, they may not want their MDT, as part of them expressing their wishes to move on with their lives.”

“I find it’s a real test of the relationship developed so far at this point, because it’s such an emotive part of the process,” says Shabnam. 

“I think the settlement, and the thinking about a budget, actually increases the pressure on families because previously it was almost an open field; now it’s very clearly earmarked and there is a definitive figure to work with. Some clients might feel there isn’t enough so they become frugal, others can feel it’s lots and want to spend loads. Then you have the interplay with families and their perceptions of the final award.

Tom Hall

“It’s hard to keep steady with the rehabilitation package when the response to the final settlement is to change things. At this point some clients may want to cease all input because they just want a break, fire everyone because they fear the funds are not enough or; purchase huge things that they felt were previously unavailable to them.”

The involvement of a deputy will help determine what is in the best interests of a client, particularly one who lacks capacity to make that decision themselves. 

“There’s a risk that they may want to shut the door on all of the professionals involved in their care and say they don’t want them to be involved anymore. For a deputy, you have to go back to the Mental Capacity Act and establish whether they have the capacity to make a decision on a specific issue, and if not, then what is in their best interests,” says Tom. 

“By this time, if you have built a strong relationship you will have earned the trust of the client and their family, through acting with integrity throughout the process – and if you have to make a decision on this note, they will trust that you are acting in their best interests. 

“But as well as the family involvement, the collaboration with the case manager is very important here too. There will be many discussions beforehand, in the lead up to the meeting with the family, to inform what their future case management and care arrangements should be. This is invaluable clinical insight for us as deputies.”

As well as care provision, clients and families may want to factor in costs for a more extravagant purchase, such as a holiday or a new car – a matter which brings the often competing issues of protection and empowerment to the fore. 

“If you look at the Mental Capacity Act, it talks a lot about supporting clients to make decisions for themselves and, when it proves necessary to make a decision for a client, taking the least restrictive option, so a lot of it is around empowerment,” says Tom. 

“It’s getting that balance of protection and empowerment, and your involvement in that goes right back to that very first meeting, where you establish the basis of trust in the relationship. 

“It could be a client wants to visit a country that is special to them, or perhaps the country where they were born if they’re from outside of the UK, to visit family they haven’t seen in a long time. That could be a very expensive trip, but it’s really important to them and that support needs to happen if they have capacity to make their own decision, or if going on the trip is considered to be in their best interests. 

“But then we could have a client who wanted to make an extravagant purchase, like a Porsche, for example. 

“Generally speaking, if someone has received a large compensation award, that is primarily to cover the cost of care, case management and therapies, because they need those things.

“It would indicate to me that perhaps they lack insight as to the extent of their own needs, which would raise questions about the capacity to make this decision. The inability to weigh up the desire for a Porsche against the need for 2:1 care, for example, would indicate they perhaps lack insight.”

The strength of the relationship between deputy or case manager and the client can really demonstrate its value in such situations, says Shabnam. 

“I think if you have created a space where they can be authentic and say, ‘Actually, I would like to do these things’ is often a sign of success in a relationship,” she says.

“It’s a sign of success in a relationship where I client can say that they’d really like to go back home, or they’d like a nicer car, although not necessarily something as luxurious as a Porsche. 

“Some people can take it to an extreme in how they want to spend their money, and are possibly motivated by other factors, but for clients who are able to reasonably raise things they would like to spend money on, which perhaps you haven’t talked about previously, is the sign of a very good relationship.”

The continuity of the trusting relationships can help to guide how the settlement is spent in the longer term. 

“While we set the narrative and set the budget at the outset, we can look at what priorities are for the client in that moment, and we can always revisit things,” says Tom. 

“You want the client to feel they’re being listened to, so I don’t like to give a hard no; rather that we can come back to something if it’s not quite right for now. 

“It’s very important to continue that dialogue and maintain the relationship, because they might think if they shut the door on that, eventually they’ll get their Porsche. But that is where the importance of a deputy comes in, and the need to be strong and act in the best interests of the client.”

The crisis and the aftermath

Inevitably, challenges can occur which cause problems in the relationships with the deputy and case manager – however strong and positive they have been previously – through conflicting views and wishes. 

The use of money can be a common area for professionals to come into conflict with client and family wishes, as well as issues around safeguarding which may compromise their best interests. 

In one case involving both Shabnam as case manager and Tom as deputy, their client’s family informed them they had booked dental treatment in India at very short notice for the client and wanted the funds to be released to finance that. 

“I spoke with Shabnam and our concerns were whether our client had the capacity to make this decision, and also whether they had all the relevant information to make an informed decision,” says Tom. 

“We were concerned about how regulated dental work is in India – which, it turns out, is not very safe – and we relayed our research to the client’s family. In the process of exploring the issue of her capacity, her family actually decided it was much riskier than they had imagined and that they wouldn’t go to India. 

“Instead, we were able to negotiate a revised arrangement for the procedure to be done in London, and we were more comfortable with that. I think it was probably more expensive, but much safer.”

While this situation was a particularly difficult period – with the family initially determined they wanted to defy the wishes of the professionals – collaboration between Tom and Shabnam, and the close communication with the family, ensured the relationship was able to recover. 

“This particular situation was really challenging and high pressured because they had absolutely made up their mind. They believed we were being difficult and acting as a barrier because they knew people who had been to India for this surgery and it had been fine,” says Shabnam. 

“But with our clients, there are all sorts of factors that must be taken into consideration, be that brain injury, facial trauma, things that wouldn’t affect people who haven’t been subject to life-changing injury. 

“When I was doing the capacity assessment in this case, the client just burst into tears. She just hadn’t understood the full extent of the situation and the risks and how difficult it would be, which was evidence in itself that capacity was perhaps lacking. And what was also very unhelpful is that her family were not being objective for her.”

“The family were certainly very invested in this trip, in having a holiday to India, and they’d been in touch with this dentist and had effectively promised a new client, which they were now going to have to go back and say no,” says Tom. 

“Even though this was a good relationship we had with this client, no matter what sort of groundwork you have, sometimes people will go off piste and do their own thing. And then we have to work hard to get back to where we were. 

“Fortunately, in this situation, we were able to work through it, although there were some sticky moments. And these types of challenges can arise, but you do have to be firm in your role as deputy and say no where it’s necessary to do so.”

Shabnam adds: “It’s also important to identify the values that drive people’s thinking. In this situation, money had a big impact on their decision making, because they thought they were doing a good thing by not spending a lot of money. 

“Financial safeguarding goes two ways. Sometimes the problems might arise when a client might try to spend all of their money and it won’t last a lifetime; but then we have those who are trying their absolute best to preserve the money to such an extent that they’re going to take huge medical risks with an unregulated dentist carrying out works. 

“It’s about balance, trying to find that happy medium, and trying to unpick that.” 

The close-working between case manager and deputy is again fundamental to crisis being averted, says Tom. 

“The time pressure can make things really difficult, and the client can often play people off against each other – that’s why the deputy and case manager need to be really tight and have trust with one another,” he says. 

“You might be told by the client that the case manager says it’s OK, and while you’re quite confident they probably won’t have done, you’re second guessing everything in that moment. 

“It’s very important for us as professionals to be on the same page and manage those difficult conversations – and to continue in the same manner we have from the very start of our relationship with the client, where they have trust in us and value our integrity. I think if you have those foundations, where a crisis does occur, you can look at finding a positive way forward once you overcome that difficult period.”

Shabnam adds: “One of the biggest factors in repair is acknowledging that this wasn’t comfortable. It can be the elephant in the room, but if you don’t acknowledge it and allow the opportunity to unpick and put to bed that rupture in the relationship, it will always be there. And that can impact on the trust. 

“You can be self-reflective, and acknowledge that even though the outcome wasn’t what you wanted, or you could have handled it differently, you’ve at least had an opportunity to process the emotions that were associated with that decision making process and the outcome that ensued. Without being able to do that, it leaves the clients unsure and feeling unsafe about having difficult situations and not being able to talk about it. 

“Acknowledging and addressing, and trying to work out what worked in that situation and what didn’t work, is vital so that there is some learning from, hopefully, both sides about how to avoid that kind of situation in the future.” 

The ‘take home’ message

Life and relationships are rarely straight forward within the general population, let alone when you overlay them with the challenges brought about by brain injury, complex care and therapy packages, capacity and financial decisions.  

The journey may be bumpy and the relationship with our clients and colleagues will inevitably be tested and certain goals delayed and unrealised.We know that outcomes cannot be perfect, but perhaps it is about holding onto the principles we know that govern how we deliver our support, like that of client-centred approaches, trust, empowerment, respect, openness alongside frameworks like the Mental Capacity Act, reflective practice and compliance that allows for outcomes that are truly meaningful, relevant and personal to our clients. This is what sustains healthy client-to-professional and professional-to-professional relationships – any outcome is then, in part, the product of these positive dynamics and interactions.

  • PsychWorks Associates works with seriously and catastrophically injured clients, their families and their professional networks. We have qualified and skilled clinicians keen to work in an interdisciplinary way, with the capacity to lead a team well towards client goals. If you feel that our case management team (or our treating psychologists) could effectively support your client as well as their system, please be in touch via admin@psychworks.org.uk or via the referral form. 

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