Case management for limb loss requires specialist expertise and significant relevant clinical experience. Rebecca Clemence, amputee clinical lead at Breakthrough Case Management, discusses what rehabilitation may be necessary following a lower limb amputation.
Rebecca has 20 years’ experience in amputee case management and shares her insights within this in-depth reflection, and includes valuable feedback from industry peers to widen the discussion
For rehab to go well the client needs a bespoke team of people who fully understand the needs of a new amputee, considering the full picture and not overlooking any needs. The case manager needs to guide the transition to life beyond limb loss. An accessible, proactive, and responsive case manager is pivotal in moving the individual goals of an amputee forward along with the recommendations of the team, whilst simultaneously addressing the complications that can crop up along the way.
The client’s domestic environment and personal situation needs to be fully appreciated to transfer the recommendations of the clinical team into day to day life and to ensure rehab is realistic and with purpose. Exhausting every avenue in relation to NHS and statutory provision requires a set of skills in itself but is part of a case manager’s role.
It is important to understand the demographic of the amputees we support as case managers – most of whom are of working age with the amputation occurring as a result of trauma or following a period of limb salvage attempts. Their limb loss tends not to be as a consequence of long-term disease management and co-morbidities in the same way the NHS demographic is. Therefore, the level of unexpected trauma, that is like a tidal wave through somebody’s life and family, must be understood.
Considering loss of a lower limb, the case manager aims to move the status of an amputee from long term wheelchair user to active prosthetics user and guide them towards living life to the most functioning and independent level possible whilst navigating the litigation process. There can be many barriers along the way and it takes a robust case manager to stand up and be counted on the client’s behalf. What aids this process, is when instructing parties work with the same rehab goals and accept the reality of rehab provision.
An amputee’s mobility status will be heavily influenced by the quality of rehabilitation on offer and the quality of prescribed prosthetics. However, it is important to highlight that even in the event of successful prosthetic rehabilitation, there will always be times of the year when a lower limb amputee will be a wheelchair user (ill health, fatigue, sore skin, ill-fitting socket, maintenance, repairs to prosthesis).
A new amputee is faced with gaping holes in many areas of life and by way of an overview (not an exhaustive list), the aspects of rehabilitation that may need to be considered include:
- Multidisciplinary amputee rehabilitation team (consultant in rehabilitation medicine, physiotherapy, occupational therapy, prosthetist, counsellor, rehab assistant)
- Care needs: eligibility for funded care should be assessed and timeframes considered for periods of domiciliary rehabilitation. Support may be available via the continuing care rules, via local authority social services and may be augmented with a privately appointed longer-term agency care package
- Psychological/peer support
- Family support
- Cognition
- Fatigue and sleep
- Care of the residual limb
- Care and protection of the upper limbs
- Compression garments (Juzo)
- Management of phantom pain and sensations
- Prosthetic rehabilitation and access to a limb centre
- Wheelchair/seating
- Home environment/home safety/accommodation/domesticity
- Household maintenance/gardening
- Integrating with community
- Food and nutrition
- Moving and handling training for family
- Relationships
- Pet welfare
- Transport
- Falls prevention
- Finances
- Employment
- Travel and leisure
- Co-morbidities
At this stage it is important to be realistic about what can be provided by the NHS and statutory services and this realism impacts timescales and outcomes for rehab.
The NICE guidelines 2022 specific to rehabilitation following traumatic injury assist in benchmarking of provision:
- Reducing delays leads to better coordination of care and rehabilitation outcomes
- Goal setting should be introduced as early as possible
- Specific to amputee rehabilitation, the rehabilitation should not be delayed by waiting for prosthetics to be fitted because the maintenance and improvement of range of movement will help prevent complications and optimise functional outcomes
- The importance of MDT involvement at all stages of complex traumatic injury rehabilitation is stressed
- Rehabilitation programmes should include physical, cognitive, psychological therapies and treatments as well as injury specific therapies and treatment
- In the post-acute period, an intensive inpatient or outpatient rehabilitation programme for people with complex injuries and rehab needs should be considered if this is likely to have an impact on change in function e.g., living independently
- Outcomes that matter the most have been researched to be overall quality of life, how acceptable the patient finds the rehab intervention, changes in mood, return to education or work and pain
Reflecting on my most recent amputee clients, the reality presented itself very early on with no offer of an NHS rehabilitation bed (bilateral lower limb amputee) and an extremely sparse discharge plan. There was no option of care or community rehab provision. This left the client and their family fearful and isolated, and any dispute of the discharge plan cannot always be addressed in time for discharge. This was closely followed by the delay in NHS rehab getting underway and the reality is the first time a client sees a physiotherapist is often when they first visit an NHS limb centre. Whilst waiting for this appointment they can reach a poor level of physical condition. There can also be delays in accessing equipment, accessing consultant led reviews and accessing all aspects of rehab. It cannot be underestimated how much the waiting game impacts psychological wellbeing.
The NHS team does their very best to support the client, create a team around the client, and get rehab appointments started but they do this knowing that there is a likelihood that the patient will at some stage go to the private sector – be that pre or post settlement. Looking at it from the point of view of the NHS, it would be interesting to have data on how many NHS appointments are used until the amputee is transferred to the private sector.
Where the litigation process allows, a speedier funding agreement between instructing parties would mean many of the NHS appointments could be allocated to other service users. The NHS, when aware of a patient in litigation can be equally as frustrated at the time it can take for funding to be agreed. Geography issues aside, are we simply using the NHS for the very early stages of amputee rehab when there is litigation involved?
During this time there is so much that can be done to improve conditioning which will optimise outcomes when prosthetic rehab gets underway. Introducing a local private physio/rehab assistant/gym who is willing to work under the guidance of an amputee specialist physio in the longer term, is beneficial. In the absence of community OT provision or where statutory services incur a lengthy delay, a private OT can address immediate issues within the home environment and ensure the client can access the community and their rehab appointments.
Ongoing OT input will focus on restoring independence via equipment and adaptations and restoring roles within a family. The family may need additional support to resume a functioning routine such as domestic and gardening assistance or a period of care. Anything to reduce the overwhelm and fear that can take some time to clear. In the longer term the OT will explore the viability of continuing to live in their current home, social outlets, driving, vocational rehab and domestic skill base.
Where funds allow, a case manager can build the right team around the client at an early stage. Collectively the team will set goals that will shape the future. The client feels that life is moving forward, and motivation moves with that.
There is the option of a period of residential rehab with achievements that exceed the outcomes of the most capable of local, private clinicians. My clients arrive as one person and leave as another!
Clients are not always ready for robust psychological support at this stage. They are distracted by trying to establish a routine and managing daily tasks. They can also be very busy with rehab appointments. Psychological support can take many forms and clients often feedback the value that peer support and acceptance add at an early stage.
Support via charities such as the Amputation Foundation and The Limbless Association add a lot of value. They have support staff and volunteers across the UK some of whom are amputees. There is nothing quite like the support of a fellow amputee. There is the opportunity to socialise, share experiences and where rehab funds are limited, charities can be very helpful in helping to access vital pieces of equipment and support. This could be the first time a client starts to see what life as an amputee really looks like.
Clients are often desperate to drive again irrespective of whether they are walking again. Hospital transport can really restrict life and consume hours of the day. Wheelchair accessible taxis are an acceptable temporary measure but the independence that driving brings also offers a chance to reinstate the role of an active parent or the ability to socialise or go to work. It is at this stage that clients often feel in control of their day.
Pain management can be one of the most challenging parts of the rehab process with intrusive phantom limb pain and sensations impacting the flow of rehab and psychological well-being. When I think back to my MSc 14 years ago as I travelled the UK interviewing amputees about their personal experience of PLP management, I question what has really improved. Of course, there are advancements in management e.g., technology, virtual and augmented reality, psychotherapy techniques, surgical techniques such as TMR but the mainstay from an NHS point of view still seems to be a pharmacological approach which is not always automatically revisited after discharge from hospital. There is expertise within the NHS but accessing a pain service with any regularity and with the relevant expertise is challenging. The private sector offers the expertise, but the availability can be geographically limited.
NHS prosthetic provision is a topic of significant discussion in the litigation process. However well-meaning, determined, and passionate the NHS limb centres are there are restrictions. Of course, there are some NHS limb centres that have supported clients to a very high standard and the client has remained with the NHS, particularly where the centre is geared up to supporting military personnel and is equipped for that purpose, benefiting all service users.
There is the National Framework to consider, operational in 2021 and due for review in March 2023. The reality currently remains that there is no strong framework in operation. Despite the concept of improved access and choice (prosthetics), the choice is controlled by what is available through the NHS with the misconception that options are now vast. This is not wholly accurate, and constrictions remain, with the recent additional funding the framework alludes to going to advanced hands and upper limbs. Budgets are regional and so service users are not getting the same input UK-wide.
It is important to highlight the demographic of NHS limb centre service users. A high proportion have not suffered limb loss because of an accident. Their co-morbidities and clinical need will be different and will have an impact on “typical” NHS provision.
Some of the issues my clients have faced when supported by the NHS include:
- Manufacturing off site which can lead to wait times of several weeks between a cast and a fitting
- Time between appointments means a client is working with an ill-fitting socket for a long time which limits the tolerance time and mobility outcomes
- Limited ability to respond to residual limb volume changes in the moment with accumulative delays for the rest of the team
- Remaining on a basic limb for a protracted length of time before a higher functioning prosthesis is considered (if at all)
- No sports prostheses for over 18s
- No microprocessor or advanced ankles
- Very rarely is there a second activity (water) limb
- No second/back up limb
- Availability of all MDT members at each appointment
- Limited amount of physio available via the limb centre (4 weeks for a current client) before being referred out to a local physio department. This impacts the MDT approach as the new treating physio cannot call in other members of the team to discuss issues in the moment. The client must then be referred back to the limb centre which incurs accumulative delays
Of course, it is unreasonable to expect the NHS could or should compete with the private sector who can exceed what the NHS has delivered and at speed (in the absence of complications). However, the private sector is also important in opening doors to social and sporting connections. It is equally important to fully appreciate the lifestyle goals of the amputee, balancing expensive technology with what the amputee actually wants or can cope with.
There are now surgical advancements such as osteointegration which is something the majority of amputees will have talked about or researched. Whilst the surgical expertise is available within the UK it is still limited and therefore the availability of local post operative support is a significant consideration.
There are times when setbacks occur; wound issues, neuromas, intrusive pain, the need for remedial surgery to the residual limb and issues (knees/hips) you discover once mobile. The case manager needs to respond accordingly which involves navigating the growing issue with NHS delays, leaning towards the private sector to access the expertise needed.
Whilst writing this piece, a question was put to my clinical colleagues to gauge opinion on what they rate as the most important aspects of amputee rehab. Their responses include:
- Early intervention with full specialist MDT – addressing physical, emotional, psychological, environmental, and socio-economic factors
- Pain management and education
- Close physio collaboration with prosthetist in prosthetic set up and alignment – same room
- Understanding a prosthesis is an aid/device, not a replacement limb – setting this expectation is vital to supporting patient acceptance
- The fit and comfort of a prosthetic system that is aesthetically satisfactory to the user
- Timely therapy at different stages of rehab – intermittent and varied intensity over at least 12 months (rehab dosing)
- Finding a long-term exercise that they enjoy and can participate in
- Rehab that is applied to everyday life and goals in the short, medium, and long term
- Offsite rehab, not just in clinic rooms
- Appropriate alternative mobility aids when not wearing a prosthesis
When discussing what we get wrong, there was an overriding concern that the litigation process can sometimes interfere with a patients recovery:
- it takes too long
- it often discourages people from returning to work
- there can be encouragement to use inappropriate prostheses and unrealistic expectations around prosthetics and rehab
- intermittent and withheld funding has a devasting impact on psychological well being
In summary, successful amputee rehab requires an experienced and responsive team around the client with access to the highest levels of expertise who collectively fully understand the needs of a person who has sustained an amputation as a result of trauma. Goals are interlinked and the lack of funds in one area of rehab limits the ability to provide holistic support and can adversely impact overall progress.
- For more information, contact Breakthrough Case Management
