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Knowledgeable today, Powerful tomorrow.

Healthwatch Plymouth Report

Polio and Post-Polio Syndrome August 2016

HEALTHWATCH PLYMOUTH SMALL GRANTS SCHEME Background As part of the Plymouth City Council contract to deliver a service, Healthwatch Plymouth was required to run a Small Grants Scheme to support small, developing, less well-resourced groups and organisations in Plymouth to undertake focused consultations within their communities. This enables local people to provide feedback about local care issues they have experienced. One of our recent recipients was the Plymouth Area Group of the British Polio Fellowship (BPF). The Fellowship is a national charity operating since 1939, supporting people across the UK affected by Polio and Post-Polio Syndrome (PPS). The fellowship is a membership organisation where individuals affected by Polio can get their voice heard. It is acknowledged that as members age they are increasingly affected by PPS and other illnesses and therefore there is a need for more individual support to help people maintain the best quality of life possible. In recognition of this, in the South West (and Scotland), Development Officers (DO) have been brought in to improve this support. The South West, with a higher than average aging population and rural isolation issues in particular, desperately needed this resource. A positive result of the DO’s work has been the setting up of support and social group in Plymouth. There was a strong feeling amongst the Plymouth group members that the knowledge and understanding of PPS was poor among GPs, potentially leading to inadequate diagnosis of their problems and a concern that their health problems were being dealt with in isolation rather than a holistic approach. The group conducted a consultation amongst members, which enabled them to draw together their experiences and identify the common concerns so that they might be raised with local health professionals. In addition, as expert patients, they also saw this as an opportunity to suggest improvements to local health provision of services for those with PPS. Consultation The initial stage of the consultation was via a questionnaire and this was followed up by a focus group that enabled further discussion of their experiences between members and an in-depth analysis of the support and care they currently receive. It also provided a much valuable opportunity to exchange experiences of self-managing their condition and thus improving support for each other. Themes and Conclusions The following themes and conclusions were identified from the consultation process: 

There are issues around getting a diagnosis potentially due to a lack of knowledge of Polio and PPS among GPs. Participants found themselves updating the GPs on PPS from information they had gained from the BPF. In some cases GPs had been reluctant to acknowledge the possibility of PPS, to understand more about the condition and subsequently making a referral to a specialist. On a positive note, some GPs were identified as being informed and others willing to learn. However, the level of knowledge in the main was considered inconsistent and therefore it becomes a bit of a lottery for the individual when they attend services.

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In the main, participants felt local health and social care services knowledge about PPS was poor. The group identified a need for guidance and training around both symptoms and treatment/management for both Polio and PPS that takes a holistic view of the individual. They also identified a lack of knowledge within physiotherapists and therefore the reduced likelihood of an effective rehabilitation programme. The impact of this apparent lack of knowledge of PPS from health services has a knock on effect to patients, where participants identified distress, anger, selfdoubt that impacts on their mental health. The Orthotics Service in Plymouth was also identified as an area of concern with an urgent need for improvement, as individuals have had particularly poor experiences. This has led to some members transferring to Exeter. Members have had to become self-reliant in managing their PPS with little intervention from the NHS. It was highlighted that difficulties occur when new health concerns arise which may or may not be related to PPS but is often not considered by GPs as being connected.

Recommendations In their report the group have listed some recommendations and actions that they believe will lead to improvements around the condition. Some of the local actions will be taken forward by the group to enhance local awareness and the raising of issues around local services with Service Providers. There are also some wider implications from their conclusions. Therefore Healthwatch Plymouth has the following recommendations: 1. NHS England to raise awareness with Primary Care about Post-Polio Syndrome and around taking a holistic approach to treatment/care management for suffers. 2. National/Local guidance around Polio and Post-Polio Syndrome is reviewed and re-issued. 3. Awareness of Polio and Post-Polio Syndrome to be raised for Physiotherapists so that the most appropriate and effective treatment can be delivered.

A GRAVETT MBE Deputy Manager Healthwatch Plymouth

Appendix 1

Report on Healthwatch Plymouth consultation with Members of British Polio Fellowship in the Plymouth area. Introduction; The British Polio Fellowship has been developing support for its members in the SW and part of this is a new group in Plymouth started. They have been keen to express their views on how the NHS deals with their condition of the late effects of Polio and Post-Polio Syndrome (PPS). After being introduced to Healthwatch Plymouth, it was regarded that a very good way to document the care they receive from the NHS in relation to their condition, both primary and hospital care, was to work with Healthwatch Plymouth on this. There is concern that PPS is not well understood by the NHS and that a consultation project on this may provide the documentary evidenced needed to raise the issue with health commissioners via Healthwatch Plymouth. The Group and British Polio Fellowship have been very grateful for the grant to allow this collaborative consultation to take place. Project activities: There were 4 agreed activities in this project: 1. A questionnaire sent by post to all British Polio Fellowship members in the Plymouth area which asked about the experience members have of their primary and secondary health care and social care in relation to their late effects of Polio and Post-Polio Syndrome. 2. A focus group held in November which enabled discussion between members - allowing for more in-depth analysis of the support and care they receive for their health and care needs. It also enabled members to share their experiences of how they manage their own condition thus improving support for each other. 3. Communication to individual members to find out more about their situation with PPS. 4. Lastly an important part of the project has been the analysis and evaluation of the activities mentioned above. This has been carried out by the Fellowship’s SW Development Officer Response to the activities; 1. Questionnaires.  27 questionnaires were sent out to member’s households. Often the partner of the person affected by Polio is also a member of the Fellowship but obviously did not complete the questionnaire for themselves. 15 questionnaires were returned. This is a 55% response. 2. Focus group.  16 attended – there was a good and lively discussion. Two new members (plus partners) have joined the Plymouth group as a result of the support other group members gave and seeing the benefits of attending. Page 4 of 9

Appendix 1

3. Follow up calls.  3 said questionnaire not relevant as they do not have PPS symptoms  2 said had posted back questionnaire but I did not receive it.  No response from follow up on others – either no phone no. or no reply, e-mailed & no response. Analysis of methodology: The response to the questionnaire was not as good as I had hoped, as the questionnaires went out to members who have experience of polio and would benefit from responding. From feedback when talking to those members who had not returned the questionnaire, a few felt that it perhaps focused too much on Post-Polio Syndrome and was not relevant as they had not been officially diagnosed with PPS or do not suffer from its symptoms thus not having anything to say on the questionnaire. Those questionnaires returned provided a lot of information about their health and social care provision. The most uncompleted aspect of the questionnaire was the Social Care section as few experience receiving social care. The Focus group went well with copious comments noted down for collation and analysis. It was a cordial and informative session for members as well as excellent evidence gathering. Audio recording of the focus group discussion might have been beneficial in picking up every comment – as asking the questions/facilitating the discussion and taking notes on the discussion was a tough call and some comments were probably not written down. The communicating with members by phone was perhaps the most disappointing. Apart from not being able to get replies (esp. when only being able to ring at times when the Development Officer was available), most of the members has not spoken to me before and were perhaps wary even though the letter introducing the project had gone out to them. The only extra knowledge gained from these conversations was an indication of its lack of relevance to them as they do not have current health needs and so could not complete the questionnaire. Results; Please see the Appendixes for full details of the questionnaire answers and Focus group discussion. The original returned questionnaires are also enclosed. First – how members have got their PPS diagnosis: Some got this through their GPs, local hospitals or the Lane Fox Unit at St Thomas’ Hospital in London. Others got it from their own research or information provided by the British Polio Fellowship. Member commented that there were problems getting the diagnosis due to lack of knowledge of polio and PPS among GPs and many had to raise the possibility of their problems being caused by PPS to their Doctors, often giving them information from The British Polio Fellowship. However members did also emphasise that there are some good GPs who understand and have knowledge about Polio & PPS and are happy to refer people to specialist services such as the Lane Fox Unit. Also some are agreeable to learn more about PPS in order to support their patients. Others however have little knowledge of polio and PPS and seem reluctant to acknowledge that someone may been affected by it, lack interest in finding out more, and reluctant to refer members to specialists such as the Lane Fox Unit often this having to be requested by the member.

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Appendix 1

We then asked members where they got their information on PPS from; BPF Lane Fox Unit

GP reading media

From this chart it is clear that the BPF has a major role in helping members understand about PPS with NHS primary care not being the main source.

own experience lack knowledge

When asking members ‘how knowledgeable did they feel health and social care are about PPS?’ The overwhelming response was no knowledge or very poor. This is rather disappointing and something that will be flagged up to NHS authorities. We asked Members how this lack of knowledge could be addressed: The overwhelming response was that there is a need for training in polio and PPS to detail the symptoms and treatment – including knowing who/where to refer patients to and to consider alternative therapies as part of the treatment/management package. We wanted to know how these difficulties of Doctors not knowing about PPS affected members – how do they deal with it. Some have been assertive, providing their GPs with information and directed /guided them to better understanding. This involved taking control oneself, finding the ‘right’ medical words to use when talking to their Drs and being persuasive. Others have found the process distressing – emotions such as anger, self-doubt coming to the fore, asking ‘why me’ and being mentally damaged. During their consultations with GPs, most members felt that PPS was not in the mind of the GP when discussing problems, i.e. they do not consider if PPS might be a cause of the particular issue. Some members have asked the question ‘could this problem be to do with my PPS?’ to insure the GP can consider the option. A few of the members mentioned Physiotherapy. There were some good comments but generally is it thought that the Physiotherapists do not know enough about PPS to provide the right rehabilitation programme – as building up muscle strength is not possible due to neurological damage but this is the aim of much of physiotherapy. We then asked about Orthotics. The words terrible, rubbish and they don’t understand were said. Some Plymouth members have transferred to Exeter for a better, quicker service. There were some positive comments as well – helpful, sorted out problem quickly. General Comments: Some members manage their PPS with little intervention from the NHS or their GPs as they have been living positivity with issues caused by their Polio for many years and are self-reliant. Difficulties occur if new health issue arise which may or may not be related to their history and symptoms of Polio but PPS is not considered as part of the analysis of the new health problems by GPs and consultants. British Polio Fellowship members in the Plymouth area seem a generally self-reliant group who know PPS cannot be cured but want to know the best ways to manage it. Page 6 of 9

Appendix 1

There needs to be an acknowledgement that the most assertive individuals make waves. This project gave the opportunity for all members in the area to participate which has broadened the scope and results of the project. Demographics and disability information; Age: in percentages:

60-69 70-79 80-89 90-99

Gender: percentages:

male female

Disabilities and health issues of those completing questionnaire:

use wheelchair/scooter

use orthotics cold intolerance fatigue swallowing problems breathing problems sleeping difficutiles spinal problems upper limb weakness lower limb weakness 0








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Appendix 1

Number of Polio/PPS Symptoms/disabilities individuals say they have:

7% 7%



3 issues


4 issues

5 issues 29%


6 issues 7 issues 8 issues 9 issues

Conclusions:   

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Majority of responses indicate the lack of GPs understanding of PPS symptoms, treatment and the specialists available to support patients and thus inappropriate referrals and reluctance to refer to PPS specialists. The members’ response to this was to find out about PPS themselves and then try to gain GPs confidence and understanding to help them gain knowledge and support the patient better. British Polio Fellowship has a major role to play in helping members (and potentially nonmembers) gain understanding of their health situation and living with it better. Support groups such as the Plymouth group are helpful in this area. The majority of members who responded to the project are under 75, 2/3rd in 60’s, so their disabilities and Symptoms of PPS, although some can be related to old age, are affecting them even before and during the early years of retirement. There is evidence of mental stress due to of lack of proper and timely diagnosis and lack of willingness of GPs to accept the patient as more knowledgeable about PPS. The orthotic service in Plymouth seems to need improvement.

Actions in response to the findings: These actions will benefit from continuing to work with Healthwatch Plymouth. 

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To work to improve GPs understanding of PPS symptoms and management and reducing reluctance to refer to specialists. This could be done by: o Communicating direct to GPs of members and providing information o Using new resource specifically designed for GPs and produced by British Polio Fellowship’s Expert Panel. Get this information book to all GPs. o Offer GP training in PPS. This has already been offered in some areas but not taken up. Engage with the Orthotic service to look for ways to improve service. Raise awareness of the BPF Plymouth support group so as to increase its support to individual members in the Plymouth area. Information displays in Plymouth Hospital to raise awareness of the illness. This has been done at other hospitals in the SW.

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Appendix 1

Some of the general comments from those completing the questionnaire:

Physio services have been really good.

Local service no use at all!

OT carried out useful assessment of house to improve accessibility Choose to manage condition myself

20 years in wheelchair – gives me freedom to go out but is expensive and drain on finances.

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HW Plymouth report British Polio Fellowship August 16  

A report highlighting issues faced by individuals with polio or post-polio syndrome when accessing healthcare services in Plymouth

HW Plymouth report British Polio Fellowship August 16  

A report highlighting issues faced by individuals with polio or post-polio syndrome when accessing healthcare services in Plymouth