Petition History update
Over the last 3 years the Scottish Post Polio Network have taken their campaign to the Scottish Parliament to bring about recognition of Post Polio Syndrome and insure PPS is included when consideration is given to lack of services for many people in Scotland who live with a long term chronic conditions. 
SPPN have highlighted the frustration in getting a diagnosis, that NHS Boards, GP and Consultants have no guidelines of best practice or ongoing treatment.
(These are ready available tried and tested but scarcely used in Great Britain)
There is no system for regular reviews and continued access to required services no longer exist for people who experienced Polio, and many professionals do not accept that Post Polio exists and have no knowledge of how to treat its many and varied symptoms.

SPPN have worked towards having a centre or localised clinics where a  consultant, medical team and specialised Nurse practitioners  with knowledge of  individual neurological conditions including polio would be available  (possibly on different days) To obtain any centre or clinic of this nature it has to be practical and cost effective it has become evident that to achieve a service PPS must be considered along with the many other neurological conditions all being different but share many similar symptoms,  this type of centre/clinic would  become an nucleus to collate information and an opportunity to bring valuable knowledge to both interested medical professionals and people who are experiencing new symptoms not always associated with their original polio.

SPPN were fortunate to have Margo Macdonald Independent Lothian MSP take up our cause and in 2004 Margo put a motion forward in the Scottish Parliament to look into setting up a “fatigue clinic” we were advised by Dr Chaudhuri Senior Lecture in Neurology and Consultant Neurologist at Southern General Hosp Glasgow, that this may be a way forward to achieving a Post Polio Clinic (get a foot in the door) there are many people suffering from Neurological conditions in Scotland including Post Polio Syndrome where fatigue is a symptom of many neurological conditions and at present not getting much recognition or follow-up, the motion worked its weary way round the wheels of Scottish Parliament and had support of many M.S.P’s
This motion is still awaiting a hearing in Scottish Parliament In November 2004 it became apparent that it was impossible to get a slot in front of the Health committee to present the problems that members all over Scotland were experiencing when consulting GP’s and Consultants, finding many knew little about Polio and even less about Post Polio Syndrome.
SPPN were advised to put a petition to the Scottish Parliament Petitions committee, this committee can decide to refer to the relevant committee who must take a view of it.
Margo MacDonald MSP and Peter Warren worked furiously on our behalf and with their advice and support SPPN raised a petition with the Scottish Parliament petitions committee the petition received 554 signatures from all over the world and was presented on 28th June 2005 by Helene MacLean Agnes Walker and Mr Malcolm Macnicol Consultant Orthopaedic Surgeon The petitions committee congratulated SPPN for bringing this to their notice and many MSP said they had previously had little knowledge of polio and even less on PPS and the problems people who had polio many years ago were now experiencing.
Petition was heard for second time in November 2005 when consideration was given to the replies received from the Scottish Executive, Neurological Alliance for Scotland, NHS Quality Improvement Scotland and NHS Boards.
      Ayrshire & Arran NHS Board;
      Argyll & Clyde NHS Board
      NHS Dumfries & Galloway
      Lanarkshire NHS Board
      Lothian NHS Board;
      NHS Orkney 
Forth Valley NHS Board
The replies from NHS boards highlighted variation of service from knowledge of PPS and willingness to improve to no interest, no service and/or disbelief that post polio syndrome exists, some did not even reply.
It was clear from the range of replies received that while some appear to be at least aware of PPS and had gone some way to addressing the needs of patients it was apparent that other boards are lost in the dark ages when it comes to providing services for people living with the effects of polio. However two responses were identified as particularly helpful one from NHS Quality Improvement Scotland and Greater Glasgow NHS Board, NHS Q I Scotland stated “We agree that the post-polio syndrome (PPS) needs to be brought to health professionals and the public attention and we need to have a fuller understanding of the epidemiology of PPS in Scotland and the UK is important. The chief executive of NHS Greater Glasgow has stated it was agreed a study is required and that it is happy to support the involvement of clinical staff from Glasgow to help assess service needs amongst patients with PPS. He suggested that if an epidemiological study was undertaken, the best way to do so is for the CSO to speak to relevant academic departments about submitting a funding proposal.
SPPN had for some time considered that a survey or audit of prevalence of PPS was needed, so welcomed reply from NHS Greater Glasgow and commended to the petition committee the work done by Southern Ireland Post Polio Group with their survey in 2004.
It was agreed to seek further comment from NHS QIS and NHS Greater Glasgow and response from SPPN (Copy of SPPN full response with petition history). The petition was raised for third time in May 2006 SPPN committee were not permitted, to make comment at these meetings but gave written submission; Margo MacDonald attended and spoke on behalf of the Scottish Post Polio Network. In response to replies from NHS QIS and NHS Glasgow it was agreed an epidemiological study such as a prevalence study would require careful planning and dedicated resources contact would be made with Chief Scientist’s office to start discussion with relevant academic departments and submitting a funding proposal for a survey. SPPN see this as the way forward to establishing the need for cost effective dedicated services for people with Post Polio Syndrome and agree a focus study based in Southern General Hospital with input from members of SPPN and British Polio Fellowship (Scottish Region) who have joint contact with sufficient numbers of people who would be willing to take part in such a survey. The SPPN also brought to the attention of Petition committee that as this would inevitably take some time it was of utmost importance that as much relevant information on Post Polio Syndrome was made available to both medical professionals and the people themselves and highlighted that NHS Direct Website a valuable resource to GP and patients had section on Poliomyelitis but little about Post polio syndrome, reference was made to Patient UK website with excellent info on PPS as an example this has been passed to chief medical officer. The Petition and the relevant replies received to date have now been sent to the Health Minister Andy Kerr and highlight the findings of our members that there is  little knowledge by the medical professional’s, very little support and advice on best practice for people experiencing symptoms of Post Polio Syndrome. The SPPN are delighted with the progress to date and have come a long way, in Nov 2004 to be told our case could not be put before the Health committee- not to be stopped, and with more than a little persuasion from Margo we presented the petition to petition committee – sort of getting in the back door. Thanks to Margo the petition had now been raised 3 times and again in Dec 2006.  We have reached all the Scottish NHS health boards, Quality Improvement Scotland the Chief Medical Officer the Chief Scientific Officer and Health Minister Andy Kerr.
No mean achievement in 24 months. If they didn’t know people who had had polio were experiencing problems they certainly do now .October 2006 2007  SPPN PETITION UPDATE

The petition was raised again on 13th December 2006 where responses from Chief Scientific Officer. The Chief Medical Officer and the Depute Minister for Health and Community Care were considered.

Response from the Chief Medical Officer

The Chief Medical Officer stated that “the review of neurological disease will be taken forward as part of the work of the Scottish Executive in developing the policies outlined in “Delivering for Health” before adding that “there are technical difficulties in establishing the incidents of post-polio syndrome in the population since it is not really possible to identify all those individuals who had infection without clinical symptoms”. He accepts that although recognition of post-polio syndrome by the medical profession has risen, the recognition can be patchy.

Response from the Chief Medical Officer cont.
He also states “A number of individuals born before polio was all but eradicated from the Scottish population in 1957, are now experiencing neurological symptoms and
these are increasingly being attributed to an early life infection with polio. Neurologists in Scotland are aware of the problem but the Scottish Post Polio Network are correct in saying that awareness within primary care would be more patchy and patients will vary in how quickly the diagnosis is made.
In order to address this he stated “In Scotland, we have a well developed network for developing guidelines and advice for clinicians on a range of topics and colleagues here in the health department would be happy to discuss the feasibility of developing a guideline with these groups

Response from Chief Scientist

The Chief Scientist stated that “due to the limited numbers with this syndrome, their limited recognition and the multidisciplinary nature of their illness, a study of prevalence may not be an easy task and on its own would be of limited value unless undertaken as part of a national review of neurological services to be undertaken by the Scottish Executive”. Having said that, he “would welcome innovative research into PPS from Scottish researchers” and suggested that a national funder of sponsor would be required for a full epidemiological study on a pan-UK basis.

Response from Scottish Executive

The deputy Minister for Health and Community Care refers to the earlier submissions and notes that the Chief Scientist’s Office, “the main agency through which the Executive supports medical research, does not apportion research funds to particular conditions”. He also brings to the committee’s attention the fact the NHS QIS is currently drafting neurological standards which are intended to apply to neurological services in general so while not condition- specific, will cover PPS. Finally the Deputy Minister argues that the low level o f cases means that “ local management approaches in each Board” is preferable to the petitioners suggestion of developing multidisciplinary centres of excellence.

Response from Scottish Post Polio Network (Petitioner)
Ref to attached :- (Scottish Post Polio Network Response February 2007)

Scottish Post Polio Network Report to June 2007
February 2007, SPPN contacted Chief Medical Officer Dr Harry Burns to request a meeting with his colleagues and take up his offer to “colleagues in the health department would be happy to discuss the feasibility of developing a guideline with these groups”
No confirmation of letter or reply has been received.

SPPN contacted Dr Harry Burns again 2nd June 2007 requesting a meeting with him and recommending “The Late Effects of Polio, information for general practitioners” manual as a basis to commence work on guidelines for Scotland