Where are we now? The current and future shape of professional support for brain injury survivors and their families
In September of 2019, the Ahead Together conference at Oxford’s Rhodes House brought together family members of brain injury survivors with recognised experts in the field, to share their deeply emotional stories, learning and wisdom on understanding family needs after this most catastrophic of injuries.
With the latest clinical (and academic) research, and the personal accounts of relatives, the conference provided a unique perspective on how professionals and families can work more effectively together towards improved outcomes.
Common themes running through the family stories included the anguish of the early days, of thoughts about whether it might have been better if their relative had not survived and the consequential feelings of guilt and shame; speakers also alluded to damaging interactions with professionals – particularly referencing careless language which had a powerful and enduring emotional impact.
The motivation behind the conference was to inspire activists for change, to generate new ways of families and professionals moving forward, ahead together.
Best practice for lawyers working with brain injury survivors and their families
Incapacity
In terms of the legal journey, the first matter to determine is whether the injured person has the capacity to litigate.
If incapacitous, then the first decision the family needs to make is who should be appointed the Litigation Friend to stand in the shoes of the client.
This comes with a deep responsibility in terms of decision making, particularly with regards to risk, costs and acceptance of the final award: this can be daunting for the family member.
It often comes at a time when the family is coming to terms with the extent of the injury and absorbing the long-term impact of the disability.
There is an imperative for the litigator to work promptly in accordance with the 2015 Rehabilitation Code, which promotes collaborative use of rehabilitation and early intervention to promote the best possible outcome for the client.
Co-ordination of medical and therapeutic input can be reassuring for the client and family at a time when overstretched state services struggle to provide optimum support.
Where liability is undisputed, the lawyer should seek an early (large) interim payment to fund case management, a care regime, to review accommodation, to challenge the Education Health Care Plan if the client is a child, or, if appropriate, activate vocational rehabilitation, and therapeutic intervention to include, where appropriate, therapy for the family or therapeutic couples intervention (which should be included as a head of loss).
An application to the Court of Protection to appoint a professional deputy should be made when it is evident that an interim payment will be agreed or approved by the Court.
Certainly where settlement is likely to be more than £500,000, a professional deputy should be appointed, as the Court of Protection requires a professional appointment where the compensation is significant.
If the interim payment is less than £500,000, it is important to do a costs / benefit analysis as to whether a professional deputy is affordable, and if not, a lay deputy should be appointed.
The application to the Court of Protection to appoint a deputy can take up to six months, so should be planned well in advance: in the meantime, the litigator can make decisions about spending from the interim payment.
Capacity
If the client has capacity, then they can litigate themselves, but caution needs to be exercised if the client has borderline or fluctuating capacity.
The same approach should be taken with a capacitous client, with early rehabilitation, seeking a significant interim payment and applying the interim payment to meet the client ‘s needs.
In this scenario, if a significant interim payment has been agreed/approved by the Court, it is essential to advise the client of the merits of setting up a personal injury trust (bare trust)
The client will need support and advice to identify appropriate lay trustees (preferably family members) and – if the compensation is going to be significant – a professional trustee, working alongside joint lay trustees.
The Ahead Together conference was a real catalyst for change with many professionals who attended relating that it changed the way they viewed their practice. However, no one expected the tumultuous times we are now living in. As such, litigators, professional deputies/trustees, case managers and other brain injury professionals are having to adapt the way they work much quicker than they expected!
How things have changed for clients
During lockdown, video calls have become the ‘norm’. What used to be a system to enable meetings across long distances has now become an essential piece of technology to “meet” clients, provide virtual therapy and to stay social in these strange times.
Video calling has been called a blessing and a curse, a potential game-changer for equality in the workplace, and unfortunately even a drain on people’s energy. However, whilst the technology has its challenges for people living with a brain injury, it has helped open up new lines of communication between lawyers and their clients and medical professionals and their patients.
The technology can also be very beneficial for those who feel isolated. “Being able to connect ‘socially’ is very important for many, as part of acceptance and commitment therapy”, Diane Aronson, specialist brain injury counsellor, said. “When threatened, mammals connect with each other and become tribal and yet we are being told to isolate ourselves. During this time video conferencing can provide a sense of soothing and connection”.
Another person who has positive experiences of video conferencing with brain injured individuals is Nicola Cale, a case manager at CCMS. We spoke to her about what she has experienced.
“As coordinator of the Oxford Silverlining [a charity offering support to people with a brain injury and their families], I have been hosting virtual meetings to replace the ones which would otherwise take place at Royds Withy King’s offices”, she said. “This has had an immediate added benefit, in that the monthly meeting has been combined with the group from Bristol’s gathering; expanding the network of attendees who are geographically far apart and giving them that vital opportunity to connect during lockdown.”
How we’ve changed
This all comes at a time when, as a firm, we’ve launched our new Compensation Protection Unit. Our Compensation Protection Team has over 50 years’ experience between them of managing and safeguarding clients’ compensation as professional deputy/trustee, and we wanted to develop this as a bespoke service for clients.
We don’t do this in isolation – we create a Team Around the Client in partnership with the family and professionals, including the therapists, case manager and Independent Financial Advisor. The (vulnerable) client remains at the heart of this multi-disciplinary team, whose aim it is to administer the compensation so that it optimises the client’s quality of life for his or her lifetime and empowers them to lead as independent a life as possible.
Our combined experience means that we have encountered most of the vicissitudes of life and that expertise has never been more in demand than in the current coronavirus crisis. Our vulnerable clients are not just facing the threat of Covid-19 in respect of their precarious health but the pandemic is creating unprecedented volatility in the stock markets with an adverse impact on investment portfolios. This is not private wealth but damages awarded to clients (who typically cannot work and are dependent on support for every aspect of their daily living) to fund their often challenging needs until their death. The Compensation Protection Unit has been able to respond swiftly to the crisis, enabling clients to self-isolate and to protect their funds, having already appointed specialist independent financial advisors.
The future
With everything we’ve learned about how the field of brain injury care and rehabilitation can adapt to massive disruption, we move forward into a whole different world of support. Lawyers, whether it be litigators or professional deputies/ trustees, typically engaged in the early years following the injury, have a responsibility to influence the landscape for people with acquired brain injury by giving them a voice and championing their rights, and those of their families.
In trying to move ahead together with brain injury survivors and their families, we hope to address and learn from the enforced changes (good and bad) at our next Ahead Together Conference in 2021 – looking at the untold stories and issues of identity for individuals with brain injury. Look out for more details of speakers and talks, coming soon!
Tracy Norris-Evans is head of the Personal Injury Department and the Compensation Protection Unit at Royds Withy King.
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