Welcome to the OPA Leeds Support Group

Welcome to the OPA Support Group for Leeds and the surrounding area. We welcome anyone diagnosed with, recovering from, or having recovered from oesophageal or stomach cancer. We also welcome those facing gastric difficulties or individuals experiencing difficulty swallowing or eating food. Whatever your circumstances, we are here to offer support, and we hope you will consider joining us at our next Group meeting. We meet quarterly and details of our next meetings are updated here regularly. 


Meeting Schedule

Contact us on 0113 226 7250 or email leeds@opa.org.uk.

Activity Time Date Location Notes

 

Thackray Medical Museum

141 Beckett Street

Leeds

LS9 7LN

Harrogate Drop-in Support Sessions

We hold regular 'drop-in' sessions for both patients and carers, where we offer information, support and guidance. These are completely free, and there is usually no need to book an appointment or confirm attendance. The sessions are held at the Sir Robert Ogden Macmillan Centre (adjacent to the Harrogate District Hospital) and light refreshments are provided. These will be taking place on the third Thursday of each month throughout 2016.

The Sir Robert Ogden Macmillan Centre
1 Willaston Crescent
Harrogate
HG2 7SX

Tel. 01423 55 7317

http://www.hdft.nhs.uk/our-services/hospital-based-services/clinical-department-service-a-f/cancer-services/sir-robert-ogden-macmillan-centre/

New Group Leaflet

We have recently developed a new leaflet to raise awareness of the OPA Leeds Group. Following feedback from both patients and medical teams, the new leaflet is much bolder and more colourful than the one it replaces. The leaflet has now been printed and will be available at future meetings. It will primarily be distributed at local Hospitals and is also available free of charge by contacting Sol Taylor - Group Secretary. Tel: 0113 2267250. E-Mail: leeds@opa.org.uk

You can also download the leaflet here.

New Leaflet


Prince Charles and Camilla drop in to OPA Session in Harrogate

David and Barbara Shreeve organise a monthly drop in session for members of the Leeds Regional OPA at the Sir Robert Ogden Macmillan
Centre at Harrogate Hospital. It is an informal occasion and gives members the opportunity to discuss issues in a relaxed and friendly environment. 
Part of the session is to enjoy light refreshments home baking, local cheeses and pies.

At the drop in session on Thursday 18 February members were delighted to welcome HRH Prince Charles and Camilla Duchess of Cornwall.
Prince Charles is the Patron of Macmillan Cancer Care, a key partner of the OPA,  that provides assistance in awareness campaigns,
accommodation for meetings, literature, training and online information for oesophageal cancer patients. The Royal visitors were
very interested in the work of the OPA and particularly in how patients and carers support one another.

John Taylor, Chairman of the Leeds Regional Group had the opportunity to speak at length to Prince Charles on the nature of the disease and
the effects of the treatment.  Prince Charles was also interested in the impact on the carer and questioned carers on their experiences.
Joan Bardsey, who had her surgery over 10 years ago, brings local pork pies to every session and was delighted when Prince Charles accepted her last pie.

View the full gallery here


Patient Pathway Update

In 2015, we were invited by Consultant Surgeon, Mr Jeremy Hayden and Upper GI Cancer Nurse Specialist, Sharon Huntley (of St James's Hospital Leeds)
to discuss our experiences as patients. Reflecting on 'The Surgical Pathway' we were asked to recollect our diagnosis, treatment and subsequent care,
highlighting what we felt worked well, as well as suggesting areas for improvement. Our views have been summarised into a written report which can be
viewed by clicking on the link below:-


Critical-analysis-of-the-o-p-pathway.pdf
 

 


Regular Meeting Venue

Our regular meeting venue is the Headingley Golf Club.

The Club Lounge
Headingley Golf Club
Back Church Lane
Leeds
LS16 8DW
Golf Club Office Tel. 0113 267 9573
Golf Club Lounge Tel. 0113 267 3052
www.headingleygolfclub.co.uk  

Dress Code
Please note that the Golf Club employs a smart casual dress policy (no denim or training shoes please).

Getting Here

The club is set in a rural area approximately 15 minutes North of Leeds, so where possible, we recommend that you travel by car. It is possible to get to the Club using public transport, but the journey from central Leeds takes approximately 30 minutes by bus and also involves a 10 minute walk. If you are unable to drive for medical reasons (or are having difficulties organising transport) please let us know (we may be able to arrange a lift with another Group member or arrange for a member to collect you from a local bus or train station). Please note that the Club is tucked away down a country lane. We therefore advise attendees unfamilliar with the area to use a satnav, and allow a little extra time to locate the venue. A fully interactive map is shown below for reference.

Parking
The Club offers a free car park, however this can get quite busy (especially during good golfing weather, or if a tournament is taking place). We therefore advise you arrive early to secure a parking place. Please pay special attention to the car park markings as some spaces are reserved for Club members.


About us

Who we are
The Leeds OPA Support Group is made up of a mixture of current and former patients, their carers and close family members and friends. Patients may be at any stage of treatment, from an individual who has only been diagnosed recently through to someone who underwent surgery several years (or indeed decades) ago. Our Group members (both male and female) come from a wide range of backgrounds and occupations, and all have very different stories to tell. We all have one thing in common though, and that is we all aim to help and support each other, very much employing the ethos of the OPA - 'former patients helping current patients'. We are also very lucky in that representatives from The St James's Institute of Oncology (including a dedicated team of Upper GI Nurses) regularly attend our meetings and we are truly grateful to them for their continued support and advice.

Our aim
We aim to help patients (and their families) pre and post treatment by offering support and guidance from those who have been in a similar situation themselves. We also aim to inform GPs concerning the symptoms of the disease and the nature of post-operative care required. In addition to the national objectives of the OPA, we also hope to conduct a number of regional awareness initiatives, plans for which will be discussed at future meetings.

Meeting Structure
Our meetings are very informal and take place in the lounge area of the Golf Club with attendees seated at a cluster of tables. Each meeting typically lasts for 1-2 hours and gives attendees an opportunity to hear the latest news, share their experiences, and learn from others. There is no obligation for anyone to speak publicly (your level of participation is completely up to you). Going forward, we also hope to be able to offer inspiring and engaging presentations on a wide range of topics, by a number of carefully selected guest speakers. After the main meeting has ended, you are welcome to stay and talk to other patients (either in groups, or on a one to one basis). Some attendees choose to stay on for lunch or a drink from the bar. A typical meeting agenda is shown below.

  • Tea and coffee
  • Welcome by the Group Chair
  • Update from the Treasurer
  • Latest news and developments (e.g. new research findings and treatments)
  • Guest Speaker
  • Questions from the floor
  • AOB

How do I know when the next meeting is taking place?
Details of forthcoming meetings will be displayed on this page and will be posted or E-mailed to a mailing list of Group members by our Secretary. If you would like to be added to this list, please contact us at the address at the bottom of this page. Where possible (to save on postage and administration costs) we would prefer to contact members by E-mail.

Can anyone attend?
Yes absolutely. We welcome patients from across the North of England, with attendees currently travelling from all parts of Yorkshire and beyond. We also welcome visitors from further afield, including representatives from other OPA Support Groups. You do not have to be a patient to attend (you may be a partner, carer, friend or close family member for example). In fact we positively encourage non-patients to attend. Feedback from attendees suggests that carers (usually spouses or partners) looking after their loved ones can often learn a great deal from other carers (answers to questions such as "Is this symptom normal?" for example). We would also encourage GPs and medical professionals of all levels to attend.

How much does it cost?
Our meetings are absolutely free to attend and there are no 'membership' fees, although we do ask attendees for a small (voluntary) donation to cover the cost of tea/coffee & biscuits and venue hire (where applicable). Additional food and drink is available at the Club bar, and bar bills will need to be settled individually. Any additional leisure activities organised by the Group may incur an additional charge, however we will notify attendees of any costs prior to organising an event, and participation is optional.

What if I don't feel well enough to attend?
As former patients, we fully understand the difficulties you may be undergoing as a patient... be they physical, psychological or both. Whilst you might not feel like talking about cancer, wherever possible, we would encourage you to attend, as we are confident you will find our meetings both supportive and informative. From gaining tips on treatments or diet, to knowing how to deal with some of the symptoms, you may be surprised at what you can learn by talking to another patient. You can also take comfort knowing that you are not going through the experience alone and that there are others who you can turn to for help, guidance and support. If you are too unwell to attend in person, please feel free to send someone else on your behalf (e.g spouse, friend, or family member).


Group Administration

Group Committee
Our Group meetings are hosted by our Chair, John Taylor, and are organised by our Secretary, Sol Taylor (John's wife). All committee members work on a voluntary basis.

John Taylor
John Taylor
Chair
Margaret Nickels
Margaret Nickels
Vice Chair
Sol Taylor
Sol Taylor
Group Secretary & Carer Support
Steve Jarrett
Steve Jarratt
Telephone Support Coordinator
Peter Nelson
Peter Nelson
Group Treasurer

Steering Group
At the meeting held on the 28th April 2012, the Support Group attendees agreed to a proposal by the Group Chair that a 'Steering Group' should be set up. The role of the Steering Group is to agree the aims and objectives for the Leeds Group, and plan meetings and events going forward (where possible ensuring that the needs and requirements of Group members can be met). Typically the Group will determine meeting dates, venues, activities, and guest speakers, etc. as well as discussing local initiatives and activities. A number of volunteers stepped forward, and the first Steering Group meeting was held on 26th June 2012. Steering Group minutes were taken and are available on request. The Steering Group members are:-

  • John Taylor
  • Sol Taylor
  • Margaret Nickels
  • John Fergusson
  • Steve Jarrett
  • Peter Nelson

Group Accounts
The Group has its own set of financial accounts administered by the Group Treasurer. The accounts are available for inspection by a representative from the OPA Registered Office in Birmingham. The Group also has its own bank account with two signatories. The primary purpose of the Group's funds is to administer and organise support meetings. From time to time, the Group may acquire surplus funds. Should this occur, the Chair will ask meeting attendees for a consensus as to how these might be spent (donated to a local cancer research project for example).


Feedback

We positively encourage feedback, and we always want to hear your suggestions on how we can make the support group better for you. If you would like to discuss a particular area then please do not hesitate to contact at enquiries@opa.org.uk or by telephone on 0121 704 9860.


Useful Links

Cancer Research UK http://www.cancerresearchuk.org/
Headingley Golf Club http://www.headingleygolfclub.co.uk/
NHS Choices http://www.nhs.uk/Conditions/Cancer-of-the-oesophagus/Pages/Treatment.aspx
Robert Ogden Centre http://www.hdft.nhs.uk/our-services/hospital-based-services/clinical-department-service-a-f/cancer-services/sir-robert-ogden-macmillan-centre/
St James's Hospital Leeds http://www.leedsth.nhs.uk/patients-and-visitors/our-hospitals/st-james-university-hospital/
Macmillan Cancer Support http://www.macmillan.org.uk
Wikipedia http://en.wikipedia.org/wiki/Esophagus
Yorkshire Cancer Centre http://www.yorkshirecancercentre.org.uk/


Getting in touch

If you would like to attend one of our meetings, would like to be added to our mailing list, or have an enquiry specific to the Leeds Group, please contact our Group Secretary. For all other OPA related enquiries, please call the OPA helpline. Tel: 0121 704 9860.

Sol Taylor
Group Secretary
Leeds OPA
36 Wetherby Road
Leeds
LS8 2QG

Tel: 0113 2267250
E-Mail: leeds@opa.org.uk

Please report any errors or inaccuracies to the Group Secretary. Image of Headingley Golf Club and St Mark's Church © Copyright Betty Longbottom and licensed for reuse under this Creative Commons Licence.

 

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