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.”
‘I lived in pain for so long – finally I’ve found a way to manage it’
Having been left with serious injuries in a cycling accident, Ian recovered from the physical impact but continued to suffer chronic pain. Here, he discusses how he has learnt to deal with it and get his life back on track.
“About two years ago, I was involved in quite a serious accident while I was out on my bike. I flew over handlebars and hit my head on the ground, leaving me unconscious.
I was left with an array of injuries, including decompression of two of the disks in my spine, which needed an operation to resolve. But from being in the ambulance after my accident – the earliest point I can remember after coming off my bike – I was in enormous pain.
While over time I have managed to recover my body functions, having struggled in the aftermath of the accident, I continued to experience pain. Most days were pretty tough. I was on a lot of medication, which contributed to my fatigue.
I was sleeping a lot, spending a lot of time in bed, I was very tired all of the time and in a lot of discomfort.
I’d always been very, very active, and enjoyed cycling, motorcycling, tennis, walks with friends and family, I was a very outdoors person – but that all came to a halt. The most I could manage was a short walk, and even then I was very fatigued.
I didn’t understand what was happening to me or why, it was just continuous, unrelenting pain.
By this point I had returned to work and the demands of my job. I was just about managing to keep on top of my commitments, but only just.
With a wife and two young daughters, my life had typically been very busy and very active, but now I was unable to do as much together, or spend as much time as I’d like with them.
This went on for over a year, and was, without doubt, the toughest time of my life.
My case manager helped me to find a solution which has enabled me to rediscover my life, through a programme called RESTORE, pioneered by RTW Plus.
Through RESTORE, an online learning programme which supports you to understand and manage pain, and take back control of your body and life – which enables access to a consultant and support from health coaches 24/7 – I have been educated in what I can do to help myself.
All of a sudden, from not knowing what had happened to me and feeling helpless, I was supported in understanding what was going on.
Prior to that, what had happened wasn’t described to me that well, and I had so much medication that everything was often quite blurry. The concept of chronic pain wasn’t something that was addressed once my physical injuries had healed.
Through this programme, I was educated as to what had happened to me. As a keen cyclist, I’d had many accidents in the past, but all were short-term tissue damage, which were very painful at the time, but that pain went away. I now was able to understand why this time was different, and to be realistic in my expectations.
I’ve never been good at pacing myself, but now I was able to stop and think what it was I was trying to do, what I wanted to do, and how to manage and achieve that.
Crucially, by understanding my pain, I became less frustrated and less dependent on medication, meaning my life would not always have to be a cloudy blur. I became more confident as a result.
From believing this was how my life was going to be, not very pleasant and full of pain, now I had hope and confidence it was going to get better. There was light at the end of the tunnel.
Understanding more about pain got me really engaged, and I started reading about it and looking for examples. After work, I’d be picking up books and learning more. Having the knowledge about what is happening to you, and how to help yourself, is so powerful.
Having been able to come to terms with my pain during the 16-week course – it’s usually eight weeks, but was tailored around my busy work schedule – I could then get my life back on track, backed by the confidence I had rediscovered.
I’m now cycling every other day, which I haven’t done since my accident, and am getting my life back to what it used to be. I’m doing things that matter and spending time with my family, which is what it’s all about.
I realise I am on an ongoing journey with my pain, and that hasn’t finished and will continue for some time to come, but I’m in a good place now – a place I could never have imagined being a few months ago.”
‘I lost my sense of smell through brain injury – I’m grateful COVID has shone a light on its impact’
Having been in a near-fatal car accident, Sally Smith has recovered physically, but a brain injury resulted in the permanent loss of smell. Here, she discusses how the once-tricky subject has now become much more accessible through its association with COVID-19.
I used to love the smell of Christmas. I honestly think that was my favourite part. The mulled wine, the spicy fragrances, the turkey dinner cooking – that really made Christmas for me.
However, for the past five years, I’ve had to live without this, after losing my sense of smell as a result of my brain injury. As 80 per cent of the flavour of food comes from its smell, my sense of taste has also been seriously impacted.
It has been a pretty life-changing experience, one which I could never have appreciated the impact of. Christmas certainly isn’t the same, but neither is any other day.
The smells of summer – the cut grass, the flowers, the barbecues – all lost. The overpowering sensation of walking through the perfume departments of stores is something I can only remember. Even the smell of burning to alert me to the fact I’ve left the dinner in the oven too long is gone forever. And the taste of my favourite foods and wine is also tainted, with a flavour so faint often I wonder what is the point.
While people are sympathetic, they don’t understand. But how could they? I’m not sure I could have prior to my own experience.
Often, their sympathies extend to something like ‘Well at least you’ve still got your hearing/sight’ as if it’s some competition between the senses. Or ‘At least you’re still alive,’ which is quite dramatic, but nevertheless true.
I did come close to losing my life in a car accident five years ago. As a back seat passenger, I bore the brunt of a lorry crashing into the back of the vehicle I was in, and suffered a range of injuries, my brain injury being the one which still affects me now and always will.
I was undoubtedly lucky, apparently it was miraculous I survived, and I do feel so fortunate to have few other lasting affects apart from my loss of smell.
The topic was one that there were few opportunities to talk about, as devastating as it was personally for me, given the fact that so few people had experienced it for themselves.
Until a few months ago, that is, and the fact that loss of smell become a symptom of COVID-19. Suddenly, it stopped being a subject that was just plain weird, and one that everyone was talking about. People began to understand.
My next door neighbour had COVID-19 and lost her sense of smell for a short period. ‘It was only at that point I realised how horrendous it is,’ she said to me after her recovery. ‘Who knew I’d actually miss the smell of my daughter’s dirty nappy?’
And while that’s perhaps not something you’d ever think you’d miss, when you find yourself in the situation of not being able to smell anything at all, however divine or revolting, you do feel a great sense of loss. Of wishing to smell anything at all.
Thankfully, for most people with COVID-19, this is a temporary state, but I have heard there could be more than 100,000 of those recovering from this terrible virus whose loss of smell has extended beyond four weeks. I can only hope this is not a permanent state for them, although undoubtedly there is much more about COVID-19 and its lasting impact we have yet to discover.
For me, my situation is permanent, and living in a world with no fragrance is the reality. Yes, things could be much worse, and I realise that, but for me, it has been life-changing.
Inspiring a brighter future for residents
A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.
Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.
The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.
A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.
Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.
Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.
She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.
“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.
“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.
“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.
“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.
“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”
Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.
Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.
“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”
Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.
The rest of the clinical team have a wealth of experience within neuro services in and around the region.
The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.
She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.
“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”
Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.
With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.
In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.
The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.
As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.
After each visit, the room is cleaned and decontaminated in preparation for the next visit.
As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.
“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”
And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.
She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.
“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.
“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”
The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.
By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.
Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.
One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.
(See Adrian’s story below – and read more here).
While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.
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