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.”