The webinar CRPS: Physiotherapy is key was delivered on 29th June 2021 and a recording is available to members.
Unfortunately, there were some technical difficulties with the video featuring someone living with CRPS. To be respectful to the volunteer sharing her story we are unable to share this video more widely, but emphasise that her desire was to promote early awareness of signs and symptoms of potential CRPS and early intervention to optimise management.
The presenters, Fiona Cowell (FC), Sharon Gillespie (SG), Selina Johnson (SJ) and Emma Mair (EM) have responded to questions posed during the webinar below.
Could your model for prevention and early intervention be rolled out around the country?
EM: Absolutely, but it needs to fit within the local service pathways and service design. In how the audit, messages and training is embedded to make it sustainable, but also to audit what is working and when it is not.
SG: We are lucky in that Fiona I work in fracture clinic in an Advanced Practice role so are able to lead the CRPS pathway on the ground; this is where you need a CRPS Champion who is present in the fracture clinic. Not all fracture clinics have therapists working in them. I have had feedback from a therapist who does not work in fracture clinic but has improved their service via getting the plaster technicians on board. Cork University Hospital has taken on our model with similar results.
We have presented at BSSH, BAHT, CRPS conferences, Physio UK, Advances in Hand Surgery 2021 and have tried to disseminate our work to encourage this. We have lots of requests to share our leaflets and posters, etc. after our presentations and are always happy to do this.
FC: It is important to remember that this has been shown to work in one centre by audit and in another without published results and elements have been evidenced in Scotland. A lot of the recommendations are simple and should be easy to roll out but there are barriers in integrating care across services that all look a bit different that need exploring to ensure a sustainable improvement is made. A good starting point is actually recording incidence of CRPS and then educating the whole team about CRPS but someone needs to drive this.
There can be variation in need in different services and it is important that the research supports tools which can be generalised as one size doesn’t fit all and this is currently being looked at. Research proposals are being submitted to explore this.
The CRPS guidelines clash with the new NICE CPP Guidelines which one should be followed?
What about the new NICE CPP guidelines and CRPS - for example concerning PMPs?
EM The NICE guidelines promote a patient centred approach and effective prescribing but there have been some challenges with the guideline identified in practice and comments have been submitted at consultation stages and after publication.
- British Pain Society statement
- Faculty of Pain Medicine statement
- Prof Blair Smith and colleague’s article
- Cassandra MacGregor and Prof Blair Smith's PPA Blog
I believe that this is being challenged by several pain consultants in England.
Is there a specific guidance for paediatrics?
All: Unaware of any different paediatric guidelines.
May I ask that the earliest age you all have seen CRPS in someone? Can it be seen in 4 - 5 year olds and under? Does the presentation differ with younger children?
EM: I have always worked in adult pain management services (16+) but have liaised with paediatric colleagues and had joint sessions with potential CRPS presentations. The youngest was 11 that I have worked with.
SG and FC: We have only worked with adults.
SJ: Although we don’t have experience in paediatric pain management but appreciate the challenges and there are some resources for understanding pain in paediatrics.
The Walton Centre booklets: Do you know someone whose body always hurts? and Chronic Pain: Information about transitioning into adult services.
How long is each 1:1 physio session within a tertiary care pain clinic?
SJ (based in tertiary care): We tend to offer 6 sessions. A new patient assessment is 1 hr and follow ups are 30 mins.
EM (based in secondary care): Our new patient assessments are 1 hour and our follow ups are 45minutes. Currently, we are still predominately digital with new assessments by telephone and follow ups by telephone, video consultation and face to face.
Is further surgery (even on different part of body) better avoided for patients who have had CRPS?
EM: Some patients report that their CRPS symptoms get worse after surgery, although this is not the case for everyone. Surgeons might be reluctant to operate on a limb with active CRPS symptoms due to the central sensitisation of the nervous system being a risk of making symptoms worse.
SG: We have operated on people (in the CRPS limb) when the CRPS has subsided and they are asymptomatic, in fact these patients are so on board that they then go on to tell the ward staff how to prevent CRPS. We wouldn’t encourage it if the patient is symptomatic and generally our consultants listen!
FC: When the surgery is not essential we usually counsel to wait until CRPS has stabilised but, when essential, it is possible but ideally with a CRPS familiar anaesthetist who can ensure adequate pre during and post op pain control. Sometimes CRPS symptoms are mixed together with mechanical symptoms and this needs extra consideration to ensure the patient fully understands that whilst some symptoms may improve others may worsen.
What about patients saying their limb is feeling very hot or ‘burning’?
All: This is common and part of using a diagnostic criteria which we would all advocate.
Raising awareness of CRPS
All: Patients need advocates to fight their corner and support them when other health care professionals may not have adequate knowledge of CRPS. Signposting these professionals to RCP CRPS guidelines can be very helpful. Providing a local GP information leaflet might also be something you could consider in your practice.
Burning nights runs Awareness Sessions anywhere in the UK.
Victoria Abbot- Flemming from Burning Nights CRPS made some really useful comments:
- “If you tell a patient ‘I believe you’ that is the best start you will have.”
- “Patients can become very adept at making their face say “I’m fine” when they’re not”
- “It can take a long time to reach acceptance of their condition, and you may need to help them to reach acceptance”
- “Accessing psychological support is extremely difficult and patients can often wait months or years”
All: Psychological support happens from your first contact. This can include unravelling the previous contact, advice given and unhelpful beliefs. Reinforcing what has been said in the presentations, we all recognise and cannot stress enough the importance of developing trust in all communication for those who have the privilege of caring for patients with CRPS. It is vital to use active listening, pick up on verbal and non-verbal cues, acknowledge the complexity and confusing symptoms which patients may need to tell you about but are reluctant to do so for fear of not being believed. It is so important to have empathy. Patients will not engage with therapies if they do not feel they are being listened to.
FC and SG: In the acute phase, it is crucial that patients develop an understanding about what is going on to adopt self-management and feeling supported. You may be the first professional to pick up on the signs and symptoms and what you say at this point cannot be unsaid and will influence everything onwards from this point.
Lisa commented “Burning nights has a free counselling service offering up to 20 sessions, and a virtual befriending service”
As highlighted during the webinar, the UK guideline and CRPS UK Network highlight the centres which offer psychological support.
Resources and emails
The CRPS UK Clinical & Research Network was established in 2006 and is a research collaboration between a number of UK NHS trusts and academic institutions with an interest in Complex Regional Pain Syndrome. A primary aim of the CRPS Network is to raise awareness and understanding of Complex Regional Pain Syndrome amongst health professionals, patients and the general public. It is a central repository for resources.
CRPS assist: an online tool for clinicians who have limited knowledge of CRPS. With content
provided by therapist and pain experts providing a diagnostic check list and clinical
Physiotherapy Pain Association offers online resources
Burning Nights UK charity
NOI offers resources and guidance
UK CRPS guidelines
The Honest Physio Pain management guidebook
Presenters' contact details
- The acute management of CRPS, developing preventative strategies within fracture and hand clinics: Sharon Gillespie (SG) Sharon.Gillespie@Liverpoolft.nhs.uk and Fiona Cowell (FC) Fiona.firstname.lastname@example.org
- Managing chronic CRPS, pain management programmes: Selina Johnson (SJ) Selina.Johnson@thewaltoncentre.nhs.uk
- Cascading knowledge across teams, managing chronic CRPS, developing regional strategies: Emma Mair (EM) Emma.Mair@aapct.scot.nhs.uk
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