West Midlands Parkinson's Network

Transcription

1 West Midlands Parkinson's Network Newsletter January 2016 In May 2015, the West Midlands Parkinson's Network held its second annual meeting. This was, again, a very successful meeting, enabling delegates from around the West Midlands to meet and discuss many aspects of Parkinson's disease management. In addition, an ambitious list of action points was generated, aiming to complete as many as possible by the next meeting, scheduled for May 26th Copies of the Network meeting reports as well as the speaker presentations and data packs can be found on the West Midlands SCN website ( in the section for the Parkinson's Disease Expert Advisory Group. West Midlands Parkinson's Network Committee Since the last meeting, several members have kindly volunteered to become regional leads for the Network, to supervise the progress of the various projects and to feedback progress at the next meeting. We are extremely grateful for their support: Amanda Mobley: Regional Lead for Managing Mental Health Issues in Parkinson s Amanda.Mobley@walsallhealthcare.nhs.uk Jodie Cooke: Regional Lead for Anticipatory Care in Parkinson s and Managing Large Caseloads Jodie.Cooke@covwarkpt.nhs.uk Caroline Gale: Regional Lead for Speech and Language Therapy and Dietetics in Parkinson s Caroline.Gale@burtonft.nhs.uk Rachel Peskett: Regional Lead for Palliative Care in Parkinson s Rachel.Peskett@covwarkpt.nhs.uk David Nicholl: Regional Lead for Complex Parkinson s Therapies and Avoiding Hospital Admission david.nicholl@nhs.net Emma Gadsby: Regional Lead for Therapy Interventions in Parkinson's emma.gadsby@geh.nhs.uk Janine Barnes: Regional Lead for Improving medications Management in Parkinson s Janine.Barnes@dudleyccg.nhs.uk 1

2 If you have any ideas, comments or questions relating to these topics, please feel free to contact any of the Regional leads or ourselves. If anyone else would like to have a more active role in the Network, please do get in touch with your ideas. West Midlands Parkinson's Network progress The tables below list the many action points generated at the last meeting, also listing the regional leads for each category and the named lead for each action point. We have already had feedback on several of these actions as summarised below. Could we please ask that the individuals responsible for each action point contact their respective Regional Lead to update them on progress. Improving PD medication management (in hospital and community): Janine Barnes Create resource list of recommended medicines aids (liaise with PUK) Encourage regional PD Clinics to invite PUK Local Care Advisors to attend (with information stands) Disseminate medication audit and service improvement plans DONE Review of Emergency drug boxes for acute hospitals (who has them?) Develop PD Care Bundle for hospital admission (Herefordshire) Home medications list template and PD alert card for patients DONE Jenni McLaren Lucy Strens Shams Duja Wasim Khan Caroline Evans Available on PUK website Caroline Evans has been developing a PD Care Bundle for use at Hereford County Hospital which is nearing the final stages of completion. The Herefordshire team have also liaised with their pharmacy colleagues to improve access to emergency PD medications. In addition, they have established a PD link nurse in the hospital Frailty Unit. The results poster for the PD Medication Audit carried out at Russells Hall Hospital last year was circulated to the Network shortly after the last meeting. We would encourage hospital Parkinson's teams to perform a similar audit as management of PD medications in hospital is often not done well. Complex Stage PD Therapies: David Nicholl Develop summary regional guidance for Advanced Therapy referrals (DBS, Apomorphine, Duodopa) Develop web-based DBS information leaflet and DVD DONE Survey of regional access to Apomorphine and existing guidelines What to do if CCG declines funding for Apomorphine Ben Wright, Carl Clarke Hayley Garrett Ben Wright, Carl Clarke Andrea Lindahl 2

3 As you all know, Duodopa is now available in England (but not Scotland) for carefully selected complex stage PD patients. The Neuroscience centres providing the Duodopa service for the West Midlands are University Hospital Coventry, University Hospital Birmingham and Royal Stoke University Hospital. Patients felt to be suitable for Duodopa therapy should be referred to one of these centres for further assessment. The Network is currently working on referral guidance for the region, not just for Duodopa but for complex stage therapies as a whole. The DBS team at University Hospital Birmingham have produced a leaflet for patients undergoing DBS. With help from Britannia Pharmaceuticals, we are also generating a map of Apomorphine providers in the West Midlands. It has recently come to light that clinicians in Shropshire and Telford are unable to request DaTSCANS for their patients. ed with this newsletter is a very short questionnaire to identify whether other regions in the West Midlands are experiencing this problem or not. We would be very grateful if you could spend the 30 seconds or so needed to answer the three simple questions. Management of Mental Health in PD: Amanda Mobley Analyse Heartlands HES data re impact of liaison psychiatry for PD Consider a pilot study for integrating Mental Health Liaison clinical nurse specialists with PD teams Sally Jones, Lara Teare Dependant on above action Avoiding Hospital Admissions: David Nicholl Obtain and disseminate information on high risk stratification software tool. Consider audit to see if reduces unnecessary admissions Identification of PD patients from Falls Service Generate Regional guidance for prevention & management of falls Disseminate information on Feed Me Up QI programme DONE Disseminate information on Care Home Tracker Shams Duja, Janine Barnes Mohamed Belhag Sally Jones David Nicholl Andrea Lindahl, Suzanne Fletcher The results of the 'Feed Me Up' Quality Improvement Project carried out in 2014 by the Stroke team at the Royal Berkshire Hospital were circulated to the Network. This project looked at reducing the risk of aspiration pneumonia amongst tube-fed (NG or PEG) patients through the use of correct bed positioning (ie ensuring that patients are fed with the head-of-the-bed elevated to at least 30 degrees during feeding). This simple intervention reduced pneumonia rates in tube-fed patients from 60% to 0-11%. Managing large caseloads: Jodie Cooke Develop proforma for non-pdns health care professionals to use when talking to/seeing PD patients Anticipatory Care: Jodie Cooke Develop Worcestershire Patient Education Programme Need PDNS lead Jane Williams, Ruth Moore, Sally Squires 3

4 PD nurses to carry urinalysis kit, training from Continence nurse specialist Nursing Home tool kit (UCB tool); work with Nursing Home educators Work with Admission Prevention Team (Worcestershire) D/W SLT re practical info for patients while awaiting assessment Encourage patients/family/gp to alert PDNS of deterioration Jodie Cooke, Rachel Peskett Jane Williams, Ruth Moore, Jane Williams Jane Williams, Ruth Moore, Jodie Cooke, Rachel Peskett Ruth Moore (Worcestershire PD nurse) has been developing stronger links with Redditch and Bromsgrove Hospitals, creating a Parkinson's Buddy scheme for each ward and scheduling weekly ward visits to educate health care professionals looking after people with Parkinson's. The Worcestershire team are also doing more training in Care Homes using the UCB tool. Palliative Care: Rachel Peskett Develop Advanced Care Planning patient info pack (incl PUK leaflets) Use of SPICT tool (CASTLE website) for patients in last year of life Use GP Gold Standard Framework for patients in last year of life Teaching pack for allied health care professionals re advanced care planning PDNS assessment paperwork - section for End of Life care PSP pathway of care DONE Hospice involvement with advanced care planning Anna Blagg Kathryn Pearson Need PDNS lead Caroline Evans Need PDNS lead Liz Burr Anna Blagg Liz Burr (from the PSP Association) forwarded an electronic copy of the PSP Care Pathway for circulation to the Network. This excellent document can also be found on the PSPA website ( in the 'For Professionals' section. Assessing people with PD: Emma Gadsby OT and PT both develop assessment checklists for PD patients Set up West Mids OT/PT network to share best PD practice info: OT best practice guidelines (British Association of OT Guidelines), PT best practice guidelines (European Physiotherapy Guidelines) Early Therapy interventions: Emma Gadsby Liaise with HEFT neurologists to discuss local management of newly diagnosed PD and therapy referrals/ interventions Initiate Newly Diagnosed PD Programme for S Warwickshire PD patients Marnie Ward (PT), Denali Ens (OT) Emma Gadsby Abi Stothard, Alison Wilkinson Lucy Gwynne 4

5 Marnie Ward has been liaising with ParkinsonNet in Holland regarding the use of the European Physiotherapy Guidelines. These guidelines are available to download free from ParkinsonNet for use by individual therapists. To get access to the guidelines and therapy outcome measures, individuals need to register on their website: (so that the ParkinsonNet team can update users of any changes to the guidelines). It would be extremely useful if therapy colleagues could have a look at these guidelines, in particular to look at the various outcome measures suggested in order to discuss developing regional guidance for physiotherapy and occupational therapy PD assessments. When to refer to SLT & Dietetics: Caroline Gale Disseminate Burton Urinary & Swallowing Questionnaires to Network for comments by end June; Revise questionnaires in light of comments and liaise with PUK July 2015; group meet again in Nov 2015 DONE Format a service user Swallowing Questionnaire (dependant on above action point) If questionnaires approved, Questionnaire pilots (Jan 2016) and data analysis (April 2016). Feed back at SCN 2016 meeting Dietary advice: Caroline Gale Develop Dietary early advice sheet for PD DONE Disseminate North Warwickshire PD service leaflet DONE Management of Drooling: Caroline Gale Develop Management of Saliva flowchart DONE Caroline Gale Lissie Broadhead Beth Simmons Beth Simmons Beth Simmons Lissie Broadhead, Leo Small Feedback on the swallowing and urinary questionnaires from Network members and Parkinson's UK has been collated and the questionnaires revised accordingly. Caroline Gale is currently setting up a pilot trial of the questionnaires, planning to start in March. Beth Simmons has drafted a 'Dietary Early Advice Leaflet' and Lissie Broadhead has drafted a 'Saliva Management Advice Leaflet', both of which will be discussed at the next Coventry & Warwickshire Regional Parkinson's meeting. Once discussed, the leaflets will be circulated to the Network. Parkinson's UK Excellence Network There has been much discussion about, but as yet not so much progress with, how best to communicate with and disseminate information to members of the Excellence Network nationally. The ambition is still to develop a website that can be accessed by individual members as well as have sections for the regional networks. In the meantime, communication between regional networks is now possible through the use of Basecamp, set up by Neil Archibald, lead for the North East & Cumbria Excellence Network. In the East Midlands, Rob Skelly and the Derby Parkinson's team have been looking at outcomes in Parkinson's patients who have had a PEG tube inserted. This is an area where there is little information available and we are going to run the same audit at Coventry to help get more data. If any other centres are interested in more information or getting involved please contact us. 5

6 Next West Midlands Parkinson's Network Meeting The next meeting will be on Thursday May 26th 2016 at the Crowne Plaza, NEC, Birmingham. Due to popular demand, we plan to keep the same format as last year, with part of the meeting devoted to regional updates, a plenary session and a workshop session. Your feedback forms from May had many excellent suggestions for the next meeting. Frequent topics requested include palliative care and advanced care planning, feedback from the Parkinson's UK National audit (if available by then), management of the acutely ill Parkinson's patient and non-motor symptom control, to name but a few. Please contact us if you have a specific presentation you wish to give or any requests for specific topics for discussion. The innovations board will again be available for anyone to showcase local achievements and innovation. We look forward to seeing you all again in May. Dr Lucy Strens and Dr Andrea Lindahl Joint Leads for the West Midlands Parkinson's Network January 20th