The rehab prescription (RP) is a simple but effective concept. It is a plan that defines what treatment is needed for the disabled person over the future weeks and months after a traumatic injury.
According to guidelines, the RP should be an intrinsic part of the UK’s improving approach to trauma.
A landmark report by the NHS Clinical Advisory Group (CAG) for Trauma to the government in 2010 paved the way for 22 major trauma networks (MTNs) to be set up across England.
Their aim was to better coordinate pathways of care for adults following major trauma. As part of its recommendations, the CAG said all severely injured patients should have an RP, detailing their rehab needs and how these should be met after discharge from acute trauma services.
Various other bodies gave these recommendations added momentum, including the British Society of Rehabilitation Medicine (BSRM), which stipulated that a specialist RP should be completed by a consultant in rehab medicine to identify patients with complex needs requiring referral to specialist in-patient rehab units.
Patient involvement should be an important facet of the RP. Since 2013, NHS England guidelines have stated that all patients with a severe injury severity score (ISS) greater than nine, should have a formal RP which should “ideally be patient held”.
Despite the guidelines – and the behind-the-scenes push in rehab circles to get the emerging system performing as it should – RP knowledge and engagement among decision-makers varies hugely.
When asked under Freedom of Information (FOI) about its usage of RPs, the trust behind St George’s Hospital – one the country’s leading major trauma centres, covering a population of 2.6 million in the South East – said: “Neither NHS England or the BSRM requires a trust to issue a rehabilitation prescription on discharge.”
In fact, out of 124 relevant trusts questioned recently about RP under FOI, 100 offered no response.
While it may be presumptuous to suggest none of these are issuing RPs correctly, their refusal to meet the FOI’s obligation to respond is loaded with indifference and/or ignorance; especially given that, in most cases, CCGs referred the FOI request to them, confirming that they should have the relevant information.
Of the 24 trusts that responded, less than half said they gave the RP to GPs AND patients. All 211 Clinical Commissioning Groups (CCGs) were also questioned about their involvement in handing out RPs.
Around 130 said they did not hold any information about RPs and 75 remained entirely silent. Only five offered any answers – but their responses suggested confusion about the RP.
In one example, a CCG representing a large conurbation in the South East said, annually, it had only overseen five cases of brain injuries in which an RP was required.
This is a staggeringly low figure for an entire year, suggesting a misunderstanding of what an RP is. Four CCGs, meanwhile, did not know that RPs should be given to GPs.
The research was carried out by the ABI Alliance, a collective of major brain injury organisations.
Group spokesperson Professor Mike Barnes says: “The majority of CCGs are completely unaware of RPs and are therefore not monitoring or following up on ABIs.
They are basically saying ‘it is nothing to do with us’. But of course, it is their concern because ultimately they pay for the services provided via the RP.”
The issues raised by the ABI Alliance reflect those highlighted in the results of the first official audit of MTNs, published last year.
While all 22 major trauma centres (MTCs) in that study said they were routinely completing the RP, only a third said they either “always” or “sometimes” gave it to patients. Two thirds said they used it only as a clinically- held tool.
The National Clinical Audit of Specialist Rehab following Major Injury (NCASRI) also found that only two MTCs routinely completed all four of the recommended measurements of the special RP for patients with complex needs.
Unlike trauma units in local hospitals, MTCs have a financial incentive to complete RPs. Under a best practice tariff, reporting the mere existence of an RP generates a payment of at least £1,500.
Prof Barnes says: “Data suggests that 94 per cent of trauma units don’t think about the RP.
“It should be a part of good clinical practice and it’s a shame that there only seems to be a response if there is a financial incentive. It is a fundamental duty to tell complex injury patients what they need going forward.”
Of course limitations in staff resources are also a factor in RP delivery, however.
“Not all centres have rehab medicine consultants to sign off specialist rehab prescriptions, which is a challenge in itself,” says Hannah Farrell, major trauma therapy lead at University Hospitals Birmingham NHS Foundation Trust.
“There are significant numbers of patients and often very little resources and support staff within MTCs to be able to deliver this document and also to arrange timely reviews and updates of it. Some specialist RPs can take up to two hours to complete.”
Farrell, a member of the Clinical Research Group for Major Trauma, explains that the lack of tariff funding is not the only reason for limited RP activity in trauma units.
“Some centres also have the challenge of developing informatics infrastructure that enables us to populate the document electronically.”
There is also an underlying reluctance to give RPs to patients, Farrell believes. “Rightly or wrongly, there is still some anxiety and apprehension about ensuring the patient has this document in their hands.
“At a multidisciplinary working group meeting last year, the strongest message to come out of discussions was that the RP must be patient-held. There is absolutely no excuse for it not to be.
“It should be [given to] the patient at an appropriate point in the pathway. It needs to be electronic, easily updateable and accessible by professionals and patients across the pathway…Ongoing multidisciplinary involvement and coordination is also paramount.”
Despite numerous challenges facing the RP, it offers great potential as a catalyst
for improved rehab journeys. To maximise its impact, and ensure the opportunities it presents are not missed, the ABI Alliance has set out four main action points.
Firstly, the RP must be completed properly in all MTCs. Even with financial incentives, not every centre is consistently meeting its mandated RP duties.
Next, the RP’s reach must be widened; to trauma units not already engaged in the process, and also to facilities handling milder brain injuries and non-traumatic ones, such as those caused by hypoxic injury.
The group also urges that the “patient-held” part of official guidance is enacted and, finally, that the RP is a “live document”.
The RP will be a key agenda point for the new All-Party Parliamentary Group (APPG) on brain injury, launched late last year.
The ABI Alliance aims to work with the All Party Group to make sure these four recommendations become a reality and the RP becomes an invaluable aid in making sure that the disabled person receives the therapy and care they deserve.
How housing design can improve quality of life
Richard Grota, director of Edward Architecture, discusses how design and adaptation of homes can be vital to physical and mental wellbeing
Housing should be designed for all forms of disability. Some people who are regarded as disabled are in fact largely disabled by their environment and can become trapped in their own homes or spaces living a life restricted by poor design.
It is critical that these people get the access to resources to give them a way of using their space that provides the very best quality of life.
In the UK, there are more than 13 million people living with a disability which comes in many guises such as physical, sensory and mental illnesses. It is becoming increasingly important to create architectural design that provides freedom of movement for all.
Varied needs require a varied design solution which can be adapted to suit different physical restrictions. Architecture is all about human comfort and in the words of The Commission for Architecture and the Built Environment, ‘by improving the quality of buildings and spaces, this will have a lasting influence on the quality of people’s lives’.
Anyone who creates a custom-made property has the opportunity to really think about what they need from their home, both now and in the future, and to take all crucial and desired elements into account.
For those who have a disability, the opportunity to adapt their house or create a new tailor-made dwelling could dramatically improve their daily life and bring families closer together.
It can be an emotional process working with people and listening to how the things most people take for granted, such as interaction with their children, have become an impossible challenge due to the physical environment they are living in.
Designs need to support developers and the people that they serve, both for their physical and mental health, and there are so many ways to achieve this. Through thoughtful design and by working closely with people, we can get to the heart of the changes that would be life altering.
Sometimes it is the smallest change that can make the biggest difference, for example, viewing the garden from someone’s bed, or the incorporation of a larger window to a small room and really listening to people when they explain how they want their space to function to accommodate the daily routines of themselves and their family members.
Central living space is often key to enabling free movement around core areas and everyone will use their homes in different ways. For some, it’s all about being able to do meal and bath times with their children with ease. For others, the incorporation of sensory rooms is life-changing, and these can take all forms depending on what elements are important for the individual.
Accessible design goes far beyond just making a home wheelchair-friendly, and there is a real stir in the market at the moment towards designing dwellings that can be stylish and modern.
Flexible homes can be designed without knowing they are for a particular need and without compromise on style. A well-designed space with a specific practical purpose will enhance rather than inhibit design.
The architect’s role is to design, specify and oversee building projects from inception through to completion, ensuring that schemes meet the needs of the individual and the recommendations and rehabilitation programmes made by their professional advisors. Designs must always have the full approval of the client, their occupational therapists, case managers, solicitors and all other relevant parties prior to works commencing, to ensure the completed works are exactly as requested.
With the current climate, many people are spending more time in the home than ever, both as a result of the ongoing fears around COVID-19 and as a knock-on effect of the rise in working from home.
Wellness as a concept has never been so important. A growing body of evidence is demonstrating how the design of buildings, streets, parks and neighbourhoods can support good physical and mental health, help reduce health inequalities and improve people’s wellbeing by building healthy experiences into people’s everyday lives.
The power of music
Ana Pessoa, a music therapist at Renovo Care Group, reflects on the life-changing impact of music
“What does music mean to me?” was one of the first pieces of written reflection I produced when I trained to become a Music Therapist.
I revisited the document where I wrote about the significance of music in my life and career choices, and I realised I did not really deepened the concept of meaning per se (maybe I will not here either…). At the time I did not know better, psychodynamically speaking, or perhaps, I was just not ready to see the bigger picture but also the detail within it.
I did write about and reflected on my first “therapeutic” musical experience, one that I hold close to my heart. I had a very close friend, a grandmother figure, who often took me to the beach to play by the sea and to pick up shells. She shared the beauty and immensity of the sea with me as well as the way she perceived its myriad of sounds, scents and shades. In our outings she would sing a Portuguese traditional song that, little did I know, would be an everlasting bond between us.
O mar enrola na areia (The sea curls onto the sand)
Ninguém sabe o que ele diz (Nobody knows what it says)
Bate na areia e desmaia (Hits the sand and faints)
Porque se sente feliz (Because it [the sea] feels blissful)
When, ten years later, she was diagnosed with Alzheimer’s disease, this song seemed to calm her down, even when she no longer had the ability to communicate verbally. Every time I gently sang the “sea song”, she would smile and sometimes drop a tear. To this day I wonder what she was feeling or remembering. I was 17 and it was the first time I truly understood the power of music.
“Our” song became a form of communication between us through the very last stage of the disease until she passed away. Aldridge states that “when the body is failing… the soul requires another form of contact” (Aldridge, 2001, p. 22) and that is exactly what music did for her. I will forever be grateful for having had the privilege of being the medium for that connection to happen, even though at the time I did not fully understand it.
I have recently lost a dear friend and musical mentor who played a big part in shaping who I am. Olga Prats was, without a doubt, my musical compass and, despite our age difference which did not really matter, Olga was my confidant of all things, a brilliantly generous pianist and, quite possibly, the biggest chamber music reference in Portugal. She was a skilled and tactful pianist with a fantastic ability to bring instruments together, letting each and every single one of them shine, but also support each other in a harmonious way. Olga’s piano playing was so present, so mindful that it was an experience in itself.
It was not until after her passing that I revisited the meaning of music: what does it mean to me, Ana the woman, Ana the pianist, Ana the therapist, and equality important, what does music mean to my patients.
I have quickly realised that psychodynamic Music Therapy, one of the approaches I practice, is much like chamber music. If there is a lack of attention to detail in the parts, the whole simply does not work. I made the connection between therapy and chamber music because if I, as a therapist, do not treat a patient taking into account all aspects of their being and their lived experience, therapy will most likely not be effective.
There are patients that are not particularly fond of music, so providing music therapy without understanding, in the first place, why are they not fond of music is, arguably, a futile exercise. Therefore, similarly to what I would do if I were to play in a chamber music ensemble where I would read and play all the parts before the first rehearsal, I start by creating a safe space for the patient to express what they are feeling “now”, exploring as far back as they are willing to.
Working with an acquired brain injury population, these feelings often come in the form of frustration, sadness, despair, loss of identity and hopelessness. The process of learning the parts and matching them to a particular sound, timbre or rhythm are profoundly meaningful, both for the patient and for myself as their therapist. Comparably to the process of rehearsing different melodic and harmonic parts, each therapy session feels as though we are putting the pieces of a puzzle together, and, in a magnificent way, Olga’s teachings that were focused on three grand musical aspects, skill, meaning and sharing, permeate and live through the way I exist as a therapist and the way I see and perceive the meaning of music played in my sessions.
I now realise how profound and complex this subject of musical meaning is. Although I still relate with the words I wrote on my first year of training, where music meant, and still means, devotion, care, survival, alliance, faith and freedom, joy and pleasure, generosity and love in their purest forms, I have also come to the realisation that music is the tool that allows patients to navigate through darkness, despair and their very personal “storms”.
And, in a neurologic music therapy perspective, music is the key to light up the whole brain like a Christmas tree birthing new neuro pathways and creating the possibility of rewiring the injured brain. Music is a common ground for lifelong connections like that which I shared with Olga.
So, thank you music for inspiring me in my naivety, for being there for me as I grew. Thank you for challenging me, and for making me question and reflect. Thank you for comforting me in difficult moments, for accompanying me in my success, thank you for giving my patients hope, and for framing lasting memories.
Rest peacefully Olga, my forever “music mother”.
- Ana Pessoa is a music therapist at Renovo Care Group
‘I’d love for my voice to be heard’
Alarna Simmons, assistant psychologist at Renovo Care, looks at the importance of reflective exercises with patients
A lot of times in our day to day interactions with patients they share with us their worries and concerns.
We guide them through the rehabilitation process reassuring them and offering not just physical support but also emotional support as they come to terms with life changing experience.
But how often do we stop and really ask the patient to tell us their perspective in its entirety? I mean beyond the initial gathering of social history for context or the questions from various assessments.
I wanted to provide a patient with the opportunity to do just that. Not only does the interview below serve as a really good reflective exercise contributing to the patients’ goal, but it is also a means of their voice being heard.
I hope this encourages other staff who work with patients in rehab or another setting, and also to other patients who are at different points in their recovery journey, may it inspire you to keep going!
Can you tell me about how you were in the early stages of your diagnosis?
“I was really scared that I would be paralysed forever. I would always think ‘will I ever walk again?’.
“I was happy until I got ill. I felt really depressed and suicidal. I thought I won’t have much of a life if I am paralysed forever.
“Everyday my emotions were very up and down. Sometimes I would feel okay and other times I would be really depressed. It could change really quickly.
“At first, I was positive I would get better but then after a relapse I felt hopeless and it was hard to be positive after that. I used to be very anxious all the time, constantly in pain, and I did not trust people”.
How are things for you now?
“Most of the time I wake up feeling positive and like I have a purpose but sometimes the negative thoughts come. I tell myself its not true and it’s good that I recognise it is happening now and I can stop it.
“When I achieve things especially in physio it makes the negative thoughts go away and I feel like I am stronger that I thought. I have learnt ways to be calm and now I feel like I can trust the people around me. I don’t care how long my recovery takes it will be worth it”.
What are some of the things that have helped you mentally?
- Relaxation has helped me to be much calmer, especially now my pain is under control
- Being able to talk to staff about my feelings and not feel judged has helped me a lot
- Positive affirmations that I say everyday like “I am good enough” “I am strong” “I am not useless” “I can do it” and “I believe in myself because I can get better” have helped to remind me every day. Sometimes I will repeat over and over “do it for [my son]”
- Being able to phone my mum helps me a lot. Before I used to self-harm but now, I can talk to my mum instead
- Seeing my own progress has helped me to believe in myself and makes me feel like I can get better. It also lets me know that the negative thoughts are not true.
Based on the difference what would you say to your past self if you could?
“I would say to be patient and stop getting angry at yourself for not being able to do physio because you will be able to do it later when the pain is under control. Try to be more positive and stop thinking negative things like “I’m not going to get better” because its not true”.
What inspires you?
“I feel inspired when staff tell me about previous patient who had the same condition as me and was doing really well when they left here. It lets me know that it is possible, and I hope me sharing this will help another person”.
What do you hope for in the future?
“I hope that I can walk again. My favourite place is the beach, so I want to be able to go there with my son and nephews and play in the water.
“I want to be able to use my hands as well to feed myself. I want to be happy all the time and not get stuck on negative things. I know I might still have some negative thoughts (as everyone does) but I will be able to let them go by without them affecting me.
“I want to feel like a proper mum to my son again and do more things with my family like quality time”.
What would you say to another patient?
“Keep going, and don’t give up, I never thought I would get this far”.
What would you say to other therapists or hospital staff?
“It is important to know the patients’ condition, be understanding and patient with them. I also like staff who are motivating, encourage me and believe in me”.
My hope is that if anyone else completes a reflective exercise with a patient that they will offer praise for not just the transparency but the bravery that comes with sharing their experience.
It is an absolute joy of mine to see the progress of our patients and conversations like the one above just reinforce the fact that as a team we are truly making a difference.
At Renovo Care, we place high importance on our values of person-centred working, effective teamwork, respect, dignity, integrity, open and honest communication, and providing an environment of learning and development for staff, patients and therapists alike.
Encouraging our patients from the beginning to take one step and one day at a time and being with them for each of these steps, celebrating the highs and lows of the rehabilitation journey is an honour and the reason for waking up in the morning and going to work with a joyful heart.
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