In April 2013, in the midst of widespread changes in the NHS, NHS England announced a large number of national clinical director (NCD) posts, including the appointment of Dr Etherington as NCD for rehabilitation and recovering in the community.
Etherington, who currently serves as director of defence rehabilitation and a consultant in rheumatology and rehabilitation medicine at the Defence Medical Rehabilitation Centre based at Headley Court, Surrey, says: “The NCDs were a group of impressive characters but initially the NHS didn’t know how best to use them, and the NCDs weren’t sure the extent of their remit. It all took a while to settle.”
Some NCDs were responsible for conditions, whereas Etherington’s post was for a process which made it challenging as it cut across boundaries.
Three years later, following an extensive amount of work in many areas, the NCD posts were reviewed and streamlined as part of the NHS ‘Five Year Forward Review’.
The number of NCD posts was reduced and Etherington’s role was scrapped. Once again, rehabilitation was relegated to the lower league.
The role of the NCD in NHS England is to provide leadership for a particular condition area, drive forward improvements and champion the condition widely within NHS England.
Having an NCD post assigned demonstrates that the area is seen as a priority and gives it prominence; however, rehabilitation consistently fails to gain or maintain that prominence.
Specialist rehabilitation services play a vital role in the management of people admitted to hospital with an ABI by taking them after their immediate medical and surgical needs have been met, maximising their recovery and then supporting their rehabilitation needs in the community.
Are the one million individuals who live with an ABI in the UK really so unimportant?
“No reason was given for the demise of the post,” says Etherington. “We don’t spend enough money on rehabilitation, and the loss of the NCD post means that there’s nobody that can argue that need at a high level.
“The NHS as a whole doesn’t focus on rehabilitation, or consider it to be an important part of the healthcare we deliver – we are constantly trying to transform how people think of rehabilitation. Rehabilitation is everyone’s business and all health professionals need to understand that it’s important – but that’s a huge challenge.”
As NCD for rehabilitation and recovering in the community, Etherington, together with Suzanne Rastrick, chief allied health professions officer, co-chaired the NHS England Rehabilitation Delivery Board.
The board set out its two key priorities as; 1) rehabilitation to enable people to remain in or return to work and meaningful activity, and 2) rehabilitation to improve the quality of life for people with long-term conditions.
There were several key working groups established including those covering commissioning guidance and rehabilitation for economic growth.
The Commissioning Guidance Working Group launched ‘Commissioning Guidance for Rehabilitation’, a document intended for use by clinical commissioning groups (CCGs) and their local partners to support them in commissioning rehabilitation services for their local population.
The guidance sets out “what good looks like” from the perspective of patients and their families, and how rehabilitation offers local solutions.
It also advocates a ‘person-centred approach’ to deliver rehabilitation services that take account of individual circumstances, preferences and needs.
This interactive tool was initially developed following the report produced in 2014 entitled ‘Principles and Expectations for Good Adult Rehabilitation’, describing what good rehabilitation is and offering a national consensus on what service users should expect from services.
The take- up of services is expected to be monitored by equality data and reported annually or as agreed by service providers.
“This was an extensive piece of work and the feedback has been generally positive,” Etherington says. On the basis that the costs of brain injury are too high to be ignored and the consequences too serious to be neglected, the focus of the Rehabilitation for Economic Growth Working Group was to drive messages about the financial benefits of rehabilitation.
“We ultimately wanted to interest politicians in a subject that they would otherwise not engage in by presenting the economic argument. Rehabilitation needed to be re-aligned so it could stand alongside cancer and heart disease, and the way to do this is to convince the budget holders.”
In the past, rehabilitation was accused of not having an evidence-base; this is no longer the case with extensive clinical and economic research demonstrating solid outcomes.
The Rehabilitation for Economic Growth Working Group produced a comprehensive economic report in 2015 for the NHS Executive Group, scoping out the idea of using cross-government funding to support rehabilitation in the UK.
The consequences of brain injury impact not only on the healthcare budget but across many sectors including employment, tax revenue and disability benefits.
Etherington’s report detailed the costs of rehabilitation but also documented the long-term financial benefits to other governmental budgets such as local government, Department for Work and Pensions (DWP), Department for Education (DfE) and Social Services.
Unfortunately the report did not get the required support, says Etherington. “If the NHS invests in rehabilitation then the DWP, the DfE and even the Ministry of Justice will all benefit. I needed to get rehabilitation up the agenda and to get the resources we need to get the job done. I thought we were nearly there, but sadly we weren’t”.
Other projects included commissioning the ‘Improving Rehabilitation Services Community of Practice (IRSCOP)’.
The Community of Practice was provided by the NHS Clinical So Intelligence Service (NHSCSI) and hosted on NHS Networks. It was an independent platform and forum for discussion and debate for all those concerned with improving rehabilitation services.
This online resource remains open to anyone, but since August this year the site has no longer been moderated or added to by the NHSCSI.
Four regional rehabilitation leads were also appointed to focus on the adoption and dissemination of good practice and to support the development of local networks and initiatives. These posts no longer exist.
Looking ahead, the diversity of rehabilitation makes planning and service provision challenging and complex.
However, Etherington maintains that the cost-bene t argument for rehabilitation is the way to engage all stakeholders: “Long-term, with or without rehabilitation, our patients impact on many government departments. I firmly believe that in order to make a difference you need to be talking about the economic implications at a senior governmental level. For example the Trauma Audit and Research Network (TARN) data is a proving to be a useful tool to demonstrate the direct costs of trauma in terms of bene t claims and is proving to be of interest to the DWP.”
With regard to commissioning, the commissioners need to better understand the scale of rehabilitation need.
However, rehabilitation will continue to be largely uninteresting for GPs; they do not understand how it helps them and the CCG has no data set for it. Etherington believes that until GPs have to collect data on ABI they will never show any interest in it.
“Are we commissioning care properly? No I don’t think we are. Why are we allowing commissioners to get away with funding just three months of rehabilitation?
“We have the evidence-base to demonstrate duration is important for outcomes – why don’t we press them for more funding? Fundamentally we haven’t got the commissioning structure right – it’s complicated for specialised services and you have to question if the money follows patient need.”
The instigation of the so-called ‘rehabilitation prescription’, that follows the patient from acute care into the community seems to present an opportunity to link specific rehabilitation and trauma care to the needs of patients.
The mandate for change, and the development of a rehabilitation prescription is driven by the AHPs, as they are the group that will use it.
However, Etherington cautions: “We don’t want umpteen different versions. We need a standardised, uncomplicated template that can communicate across the care pathway.”
Specialised services commissioned by NHS England are grouped into six National Programmes of Care (NPoC), of which trauma is one and includes traumatic injury, orthopaedics, head and neck and rehabilitation.
The function of the Clinical Reference Group (CRG) for the Trauma NPoC is to provide clinical advice and leadership. Etherington is hopeful that the CRG can take a fresh look at the status of rehabilitation and provide sound innovative advice to NHS England on the best way that these specialised services should be provided.
He says: “There is a need to recognise that there is a financial burden to not funding rehabilitation.”
He believes there is a need to look at more radical ways of funding rehabilitation such as co-commissioning with various collaborations currently looking at different business models. “Radical thinking is required,” he says.
“Rehabilitation is not, and never has been, a priority. It isn’t visible, patients can’t shout loudly, the charities are small and generally we’re all not vocal enough about rehabilitation. We somehow need to shout louder and make it a priority.”
The couples therapist who rehabilitates love after brain injury
Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.
“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.
“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.
“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”
But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.
Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.
“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.
“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.
Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.
“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.
“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”
It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.
“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”
Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.
“There are unique challenges here to consider, but accessing the right type of support is difficult.”
Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.
“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.
“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.
Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.
“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.
“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”
When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.
“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”
Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.
“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”
But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.
“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”
Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.
Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.
“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”
But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.
“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”
Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.
The light and shade of brain injury recovery
When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…
Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.
Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.
“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.
Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.
“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.
“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”
Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.
“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.
“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”
The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.
Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.
She says the name of the book came from several inspirations.
“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.
“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”
Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.
“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.
“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.
“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”
“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”
Eates was also surprised to see such a positive atmosphere in Headway’s studio.
“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”
Eates is looking forward to the members seeing their work in the final book.
“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.
“It will be interesting for them to see how their artwork and their stories have inspired others.”
Scottish MP talks rehab, criminal justice and out-of-work assessments
NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.
Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.
“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.
“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”
Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.
“I became aware from a personal point of view that these issues are often overlooked,” she says.
“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”
Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.
She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.
“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.
“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”
Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.
The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.
“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.
Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.
In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.
“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.
“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”
However, the service does get some referrals from the NHS to reduce patients’ waiting times.
“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.
Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.
“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.
But Cameron has found this isn’t unique to parliament.
“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.
“This is a huge issue that needs to be addressed within criminal justice.”
Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.
When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.
“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”
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