Medical Director Bulletin
Monthly communication from the ODT Medical Director
Message from Professor John Forsythe
Two important meetings happened this month.
First, the Lung Summit. I think this may be the first time that interested clinicians (using that word in its widest sense) patients and their representatives, commissioners and NHSBT have sat in a room to review Lung transplantation in the UK with the aim of improving the service in the future. It was an excellent meeting and many recommendations will drop from it.
Lauren Caddick is a graduate management secondee working with us at the minute and she was heavily involved in the organisation of the day. Her account is below.
Transplant PLC (the adult and paediatric kidney transplant units of London collaborative) had their first Annual meeting last week. Again, a very successful meeting. I am grateful to the senior exec of NHSBT for their support of this initiative and also to Sir David Sloman, Regional Director of NHS London for his endorsement and giving up his time to come to the meeting. Gareth Jones gives more detail below.
And finally, some news from the Comms team regarding the publicity campaign for the change in Legislation.
The UK Lung Transplant Summit
Recent transplantation data (in the Organ Donation and Transplantation Activity Report 2018/19) demonstrates that, while the numbers of organ donors had continued to increase, the number of transplants had slightly decreased. The data suggests that there may be issues with lung transplantation, where transplants rates fell significantly last year (although show signs of recovery this financial year) but the UK rates are still significantly lower than other countries. Therefore, it was decided that a Lung Summit should be organised in order to investigate the problems facing the service.
The lung summit was held on the 31st of October 2019 at Mary Ward House in London and built on the outcomes of the Transplant Sustainability and Resilience Summit last year. It brought together patients and their representatives, delegates (clinical and managerial) from the 5 transplant units across the UK and national stake holders such as: government, NHSBT and commissioners. By bringing these individuals together from across the country we were able to create a unique situation where all stake holders were represented and were able to voice their opinions on the future for lung transplantation in the UK.
The day received great engagement, with the Units presenting data for patients on their centre waiting list, transplantation demographics, acceptance criteria and resources. The afternoon began with a thought-provoking and inspiring presentation from a lung transplant recipient.
Delegates then gave their thoughts and advice about the barriers to lung utilisation and the potential solutions.
It was clear that a number of recommendations will come from the meeting – these will be consulted on widely before being put into action. If these are taken forward, it was generally agreed that the service, across the UK, would be significantly improved.
Transplant PLC - the first meeting of the renal transplant Pan London Consortium
I am delighted to report that the first Transplant PLC general meeting took place on 4th December at Mary Ward house in Holborn. The meeting was strongly supported by attendance from transplant clinicians, nurses, coordinators, H&I staff and local commissioners.
Professor John Forsythe opened the meeting before Matt Robb from NHSBT statistics defined the current key performance indicators across the adult and paediatric renal transplant units in London. Sir David Sloman highlighted a number of health demographics within the capital, took enthusiastic part in a prolonged Q and A session, and endorsed the approach of the Collaborative.
Lead members of the PLC steering committee updated everyone on the progress of the three key strands of work for the last year. Professor Nizam Mamode presented the organ sharing protocol where a low risk recipient and donor organ can be transferred from one London transplant unit to another in times of peak activity or major incident. This will enable transplantation of organs that might have been declined due to lack of resource and utilise additional capacity in other London transplant units. Dr Gareth Jones presented a study on workforce (both planning and a template to predict the results of intervention) in the area of capacity for long term transplant follow up. This session concluded by a table top exercise on where PLC wish to focus their activities for the coming year.
After lunch, Matt Robb presented pan London data on organ offer declines and Mr Christopher Callaghan brought the group up to date on the organ offer scrutiny scheme and data provision.
The final session required London consultants to discuss patients who were removed from the list after organ offer decline or instances where organs were declined due to patients who were not fit or unavailable. This led into a rapid fire session presented by trainees where the five adult and one paediatric centre had declined an organ offer but another London centre had transplanted the kidney. The declining and transplanting centres presented their outcomes.
The group wish to thank Liz Armstrong at NHSBT for her invaluable help and support in organising the group and arranging a very successful meeting.
Pass It On
Find out more about the Pass It On campaign with our Campaign Stakeholder Pack
Communicating the change in the law in languages other than English
We are committed to ensuring that everyone has access to the information on the change in the law around organ donation that will come into effect in spring 2020. It is vital that anybody living in England and eligible to become an organ donor, is made aware of the change in law and able to make a fully informed decision about their choices.
We have worked with stakeholders and government organisations, to identify and make information on the law change available in languages including:
The materials that will be available in these languages include:
- printed leaflet - available to order from nhsbtleaflets.co.uk*
- downloadable fact sheet- available from the language drop down menu
- downloadable FAQ document – available from the language dropdown menu
- Organ Donation Law in England animation video – available to view from the drop down menu
The list of languages available followed discussions with stakeholders and other public campaigns with a high number of requests for information in these languages.
We are still in the process of finalising some of the translated materials in these languages and will make these available to order or download as soon as possible. At the time of writing, Hebrew and Yiddish documents are not yet available.
We have also developed an animation that has been signed in British Sign Language. Additionally, we are in the process of developing materials to be available in an easy read option. If you would like more information when and where these materials will be available please contact us at email@example.com and we will be happy to keep you informed.
If you have any queries about materials available in languages other than English, please contact firstname.lastname@example.org.
Newsletter Transplant 2019 paper copies now available FREE:
We are pleased to announce that the paper copies of the Newsletter Transplant 2019 have just arrived from the printers. This publication, published annually, provides official data on organ, tissue and cell donation and transplantation at European and International Levels
You may order them for free at the EDQM Store
Please feel free to disseminate this information among national and international transplantation networks.
May I end by sending you every good wish for the season and thank you for all the immensely hard work over 2019.
Professor John Forsythe
Associate Medical Director of ODT
Update from Katie Morley, Lead Nurse Recipient Coordinator, NHS Blood and Transplant:
November saw Chris Watson chair his last Kidney Advisory Group meeting. A little reminder for everyone that each advisory group offers two observer seats and are very worthwhile taking the opportunity to attend this meeting.
The second bereavement workshop was held in Newcastle and evaluated well. Although only a small group, some key learning points were discussed and there was lots of enthusiasm in the group. Thank you to Helen Bentley for facilitating the morning of this workshop.
We also ran our first Donor Records Workshop in Liverpool and again received enthusiastic feedback for this workshop to be repeated. It was great to have a multi-disciplinary approach to resolving some ongoing communication issues and update everyone on the work that has been going on behind the scenes. Thank you to everyone who travelled to Liverpool.
Both cardiothoracic and liver recipient co-ordinators held their six-monthly meeting and discussed pregnancy and the complications associated post-transplant. It was fascinating to be able to compare the differences and similarities in practice across the disciplines. Dates for the next meetings will be circulated in the new year.
May I wish you all a very Merry Christmas and a wonderful New Year.
Learning from Excellence
Many of you will have heard of ‘Learning from Excellence’ and I am pleased to share that we now have a route through ODT for all those within organ donation and transplantation, both internal to ODT and external, to highlight excellence within the pathway.
Everyone generally comes to work to do a good job, but traditionally the focus has been on the small percentage of times when something goes wrong, rather than the significant percentage of when it goes well, or when people go over and above.
Whilst we do still need to look at when things go wrong and what we can learn, by sharing when things go right we can not only open a different route to strengthen the pathway, but help improve resilience and staff morale by sharing the positive feedback.
Please share the link below with your colleagues:
If you have any feedback or suggestions, please let us know via email: Jeanette.email@example.com
Law change enquiries
Enquiries from members of the public should be forwarded to firstname.lastname@example.org or to our dedicated enquiry line 0300 123 23 23.
Press or media queries or people wanting to support the campaign or share their story, should be directed to the press office:
- email email@example.com
- tel 01923 367600
Enquiries from charities, political figures (or organisations) and governments should be sent to firstname.lastname@example.org (mailbox monitored 09:00-17:00, Mon-Fri).
We are aware of a Twitter account which is objecting to the opt out system for organ donation. The account is following some of our colleagues who work within organ donation and transplantation, stakeholders and organ donation case studies. Our social media and press teams are monitoring.
If you find yourself being followed or pulled into unwanted conversations on social media, here’s what you can do:
- Flag any accounts or online information to NHSBT’s Press Office or Social Media team:
- Email: email@example.com / firstname.lastname@example.org
- Telephone: 01923 367 600 (including out of hours)
- Avoid being drawn into a public discussion or debate by these types of accounts
- Contact us for advice and support if you are unsure of what to do
Thank you to everyone who has helped to bring things like this to our attention.
Meetings and events
6th Congress of the Spanish Transplantation Society - SET2020
8 -10 May 2020
The Spanish Society of Transplantation (SET) is delighted to announce that the 6th edition of SET2020 Congress will take place in Málaga, Spain, from 8 -10 May 2020.
The purpose of the SET is to act as the voice of transplantation professionals within Spain, providing representation and organising activities, training courses, investigation programmes, congresses, educational and research scholarships and awards.
The abstract submission period will start in October 2019.
Details of upcoming group meetings:
- Cardiothoracic Advisory Group
- Cardiothoracic Patient Group
- Kidney Advisory Group
- Kidney Patient Group
- Liver Advisory Group
- Liver Patient Group
- Multi-Visceral & Composite Tissue Advisory Group
- National Organ Donation Committee
- National Retrieval Group
- Pancreas Advisory Group
- Research, Innovation & Novel Technologies Advisory Group