"Could be more gradual and interactive"

About: Manchester Royal Infirmary

I wasn't overly impressed by the hydrotherapist I saw, who didn't follow the guidelines on pacing and continually asked me to do too much, also didn't really understand my condition/biology. The hydro sessions proved far too painful. I noticed another woman in the pool being given a much gentler session and not being pushed nearly as much, so maybe they thought I just looked like I could do more? (That happens a lot). I should have stood up for myself more and said no, it's too much, I'll be in agony later. I didn't: I just stopped going. It's hard say no. I found myself skiving when they wasn't looking! They also noticed that by the end I was limping: I hadn't even realised I was, but it shows how it had all been so much I was already in pain (pain is generally delayed for me). Maybe they need to build up more gradually and ask patients 'do you think this exercise will be ok?' 'have you done enough or can you continue?' etc. As for physio, I saw one for an assesment and they seemed quite nice. I have noticed, though, that they seem totally unnerved by pain that can't be fixed. Roughly 25% of people with Ehlers Danlos III don't find physio helpful, so they need to be prepared for that. It is to their credit they seemed sad about it, though, I suppose. On a philosophical note though, I think physiotherapists and hydrotherapists (like most of the general population) find it hard to accept that some health problems can't be fixed... that exercise isn't the answer to everything. I had so much physio over the years, I eventually had to draw a line and admit it hadn't helped at all.

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Response from Patient Experience Team, Central Manchester University Hospitals NHS Foundation Trust

Thank you for taking the time to highlight your concern about your hydrotherapy and physiotherapy treatment sessions. We are sorry you did not have a positive patient experience, and we are keen to learn from your experiences to improve services. Whilst the Rheumatology Therapy team has significant experience of treating Ehlers Danlos, your feedback has prompted them to organise a training session in October to coincide with new staff joining the team. The session will focus on increasing knowledge of the condition and current guidelines, and emphasise the importance of pacing during treatment.

We are concerned to hear that you felt unable to discuss the impact of the exercises with the therapists. Aims and objectives of treatment should be discussed and agreed with patients prior to commencing treatment as this is the foundation of the therapeutic partnership. Patient feedback during exercise sessions is a very important element of this partnership. The Therapy Team Manager has reminded staff of the importance of the above, and the need to invite immediate patient feedback and to modify sessions accordingly.

Therapy intervention for chronic pain is rarely curative and emphasis is placed on using physical exercise to assist in the overall management of symptoms. The aim is often to optimise function within the patient's limitations and to prevent further deterioration. We apologise if the therapists did not acknowledge this or fully discuss this with you during your attendance.

It is difficult to respond fully to the specific concerns you have raised. The service manager would be keen to investigate your concerns further to give a full and more detailed response. If you contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk they will be happy to discuss this with you.