BRITISH POLIO FELLOWSHIP SOUTH WEST ENGLAND POST POLIO SYNDROME CONFERENCE JUNE 2016 ENGAGEMENT SUMMARY

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1 BRITISH POLIO FELLOWSHIP SOUTH WEST ENGLAND POST POLIO SYNDROME CONFERENCE JUNE 2016 ENGAGEMENT SUMMARY Healthwatch Bristol engaged with the South West England British Polio Fellowships, Post Polio Syndrome Group at their annual conference in Bristol. Healthwatch Bristol captured the views of the members who attended the conference in relation to their experiences of accessing Health and Social Care Services.

2 POST POLIO SYNDROME ENGAGEMENT JUNE 2016 Introduction The British Polio Fellowship The British Polio Fellowship is a charity dedicated to helping, supporting and empowering approximately 120,000 people in the United Kingdom living with the late effects of Polio and Post Polio Syndrome (PPS), a neurological condition. It provides information, welfare and support to those living with the effects to enable all to live full, independent and integrated lives. For more information about the British Polio Fellowship visit their website: W: The Availability of hydrotheraphy pools for PPS patients. There are currently no known pools in Bristol and the closest hydrotherapy pool is located in bath, which is very far to travel and expensive to access. 1

3 The engagement Healthwatch Bristol contributed to the conference by presenting to the delegates at the conference a Power Point presentation, which was then followed by a feedback session. Delegates were given the opportunity to ask questions after the Healthwatch presentations. Also on each table there were Tell Us Your Story leaflets, pens and A5 post-it notes for delegates to give their feedback about their experiences of accessing post-polio syndrome services and other related health and social services. The Resources Healthwatch Bristol web page Healthwatch Bristol resources Healthwatch Bristol Tell Us Your Story leaflet Post-It Notes with comments 2

4 3 Comments received: Negative 1 Mixed 2 Positive Primary Care Services General Practitioner (GP) The commentator stated that they are not able to discuss with their GP their medical needs, as the GP does not have an awareness of PPS nor are they aware of the medicine contraindications when prescribing medicines for PPS patients. Lawrence Hill Health Centre The commentator informed Healthwatch Bristol of their experience of having a referral made by their GP at the Lawrence Hill Medical Centre to the which they stated was a very fast process. Secondary Care Services Commentator informed Healthwatch that they were not able to obtain a diagnosis for a lung condition and feel that they are not the only person with PPS to have such difficulty in obtaining a diagnosis. The Commentator stated that doctors at the BRI lack knowledge of polio and the treatment of PPS. The commentator stated that upon attending their appointment at the BRI, the consultant informed them that they knew nothing about polio. The commentator further stated that there was a doctor on the word who had some knowledge of PPS but, the commentator did not receive any treatment as no assessment took place, which left the commentator feeling like it was a waste of a referral. The Commentator stated that from their experience of accessing treatment at the BRI, doctors are not experienced in treating PPS. Lane Fox Respiratory Unit - Guy's and St Thomas' NHS Foundation Trust Commentator stated that the referral process to be assessed at Lane Fox respiratory unit is a long process, which is frustrating for the commentator as obtaining a diagnosis is important for them.

5 4 Southmead Hospital The commentator stated that their experience of accessing physiotherapy at Southmead Hospital has been very positive. Cheltenham Hospital Orthotics Department The commentator stated that they were not happy with the poor system and services provided by the orthotics department. Orthotics Department The commentator stated that the service provided was poor. The commentator stated that orthotics services are very expensive, it cost approximately 1,000 for a pair of shoes which is poor value for money and the waiting process is long. The commentator further stated that they feel that commissioners need to look at the procurement process which is currently not fit for purpose in Bristol orthotics department. The commentator stated that a new provider should be sourced, even if it means looking abroad. Southmead Hospital The commentator stated that the service provided at Southmead is horrible and instead, they needed to go to Taunton Musgrove Park Hospital for treatment. The commentator stated that their back condition has deteriorated due to obtaining a poor diagnosis at Southmead and instead of having surgical intervention was referred to physio therapy which has caused further deterioration to their back condition and has now resulted in the need for five separate surgeries to be performed on their back. Commentator also feels that medical professionals at Southmead hospital have a very poor awareness of PPS. General comments The commentator stated that there is a need for a regional PPS specialist to support PPS patients at consultations the commentator stated that individuals need to be proactive. GPs do not know everything. Patients should ask to see professionals who are a specialist in a particular field of medicine for example Parkinson or Multiple Sclerosis the commentator informed Healthwatch that they were diagnosed with PPS at the Lane Fox Respiratory Unit in London and were initially prescribed a supply of Modafinil. However upon completion of the medication, the commentated made a request to their GP for a repeat prescription, which was challenged and queried by the local health

6 5 authority on the grounds of cost and it was suggested they might be able to get by on one tablet as opposed to three the commentator stated awareness of PPS has to be directed across and throughout the entire care sector the commentator explained that, from their personal experiences, attention needs to be paid to the orthotics services and the sophistication of surgical appliances; the commentator highlighted their experience of accessing Lane Fox rehabilitation and assessment unit in London as poor there should be a specialist PPS nurse available in Bristol availability of hydrotherapy pools for PPS patients: The commentator stated that there is currently no known hydrotherapy pools in Bristol and the closest hydrotherapy pool is in the Bath, which is far to travel and expensive commentator stated that it is their view that newly qualified GPs should be taught about PPS so that they have some knowledge about the condition, they further stated that PPS should be included in their doctor training the commentator stated that when an individual is diagnosed with a medical condition they should be given written information about their diagnosis such as a booklet which explains the condition the commentator stated that GPs and consultants are unwilling to refer patients to specialist services commentators felt that there is a lack of access to hydrotherapy facilities and oxygen therapy in Bristol and the very few are also very few available facilities are expensive to access or travel to the commentator stated that there should be better awareness of PPS amongst health professionals and clinicians. They further highlighted that the introduction of polio awareness in the doctors training program is vital and should also be included as part of their continuous professional development and revalidation process.

7 6 Healthwatch will.. All the feedback provided by the group has been inputted to Healthwatch Bristol s Feedback Feed Forward database and will be included in the Healthwatch Bristol Quarterly Report. Healthwatch will be sharing this report with Healthwatch partners including Bristol Clinical Commissioning Group, Bristol City Council, the Care Quality Commission, NHS England and Healthwatch England. The report will also be presented to the Healthwatch Bristol Advisory Group to propose further uptake of the issues identified in this report. The report will be available on the Healthwatch Bristol website ( and circulated to our mailing lists via the monthly e-bulletin. Looking forward. Plans for future work between Healthwatch Bristol and the British Polio Fellowship. Healthwatch welcomes and encourages users of South West Post Polio Syndrome Network to continue to contribute their feedback to us using the communication methods included at the end of this report. Healthwatch also supports members of community groups to become Volunteer Champions so that they can represent the experiences and needs of their community group. If you would like to find out more about volunteering with Healthwatch, please contact us using the details below.

8 7 Tell Us Your Story Healthwatch Bristol wants to hear from you about your experiences so that we can tell services your needs to create the best local services. Text us - text bris followed by your message to us at info@healthwatchbristol.co.uk Call us: Write to us at Healthwatch Bristol, The Care Forum, The Vassall Centre, Gill Ave, Fishponds, Bristol, BS16 2QQ Or visit our website to see more at