The Listen Committee is very aware of how difficult this is for our members – as we are having exactly the same experience ourselves.  Our circumstances vary as do those of our members but one thing we know is that it can be very lonely and scary.  Listen cannot provide you with advice on what you should and should not do – however we are collecting resources to help you make your own decisions.  We are also running Listen Group Meetings over Zoom and will continue to develop these in the coming months.

 

 

Latest Government Advice

Here is the link to the latest Government advice for clinically extremely vulnerable people. It is important that patients use this as their main source of information. Please keep checking back as this changes often.

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Advice from the British Liver Trust

The British Liver Trust publish very useful information.  Here is their latest advice on shielding for Liver patients. https://buff.ly/2CRpVqJ

Importance of immunosuppression for transplant patients

There are many erroneous and misleading news items in circulation at the moment, putting forward all sorts of theories.   We would like to stress that it is vital that transplant patients continue on their normal medication regime and never change this without reference to their consultant or other appropriate clinician. 

Useful information on Mental Health in these times

We feel this is a very useful article as a framework for coming out of lockdown, which is another stressful time for those who have been shielding. 

https://www.mentalhealth.org.uk/coronavirus/coming-out-of-lockdown

Mental Health Resources

The SLaM recovery college, which is based at the Maudsley Hospital and supported by the Maudsley Charity is making its online courses available for free to everyone during this time. They are held as webinars over Microsoft Teams and include daily Mindfulness courses, and various others that Listen members might find useful. Every Friday evening they post the following weeks’ webinars via this link https://www.slamrecoverycollege.co.uk/news. The college also have a Covid resources page which members might find useful: https://www.slamrecoverycollege.co.uk/covid-19-resources.html

Arrangements for Kings clinic appointments

New transplant patients will still attend clinic at Kings during the first three months following transplant; also those for whom there is a particular clinical need will be asked to attend in person. However, most routine appointments will be taking place by phone (or possibly in the future via video link). Patients should be contacted well in advance of their appointments letting them know what will happen. During the appointment, you will be informed on other action you need to take, e.g. arrangements for your blood test etc. We suggest you make a list of questions in advance of the call to ensure you get all the information you need.

We are all very aware that Kings has been under immense pressure during these times and many staff have been redeployed to other areas of the hospital. The Liver Unit has retained a skeleton staff throughout and some urgent transplants have been performed.  Now staff are returning to the department. Out patient appointments have continued through this time and everything is being done to ensure our appointments go ahead in an appropriate form. For the moment for most people this will not involve attending Kings. However as Kings works out the process going forward there is currently no clearly defined process so we suggest the following approach:

If you have not heard two weeks before your appointment to confirm the form it will take, please call Liver Outpatients department to confirm arrangements – see Contact section for the number. If Liver Outpatients cannot help, it is suggested you call your consultant’s secretary – you can find the number on your last clinical letter. If no success, call the Transplant Co-ordinators (link to their number on the contacts page).

Also, if it has been arranged for you to have your blood test at your GPs and a tacrolimus level is included in the test, do as you would do for a normal clinic appointment and do not take your immunosuppressant until after the test – and also let them know when you last took you Advagraf/Prograf.

See link on the main Kings College Hospital web site for official information: https://www.kch.nhs.uk/news/public/news/view/32078

Pharmacy services

Pharmacy is still providing a “pop in” advice and prescription service on Tuesdays and Thursdays within the Liver Transplant clinic.   For those not currently attending clinic in person, remember that the pharmacy team are available as usual via their email service – see Contacts page for details.

Listen Mentoring Special arrangements are being made for Mentoring services whilst we cannot visit Kings. Click here for information.