Join our organ donation web chat on Monday 5 September

Lucy Dames

Join us on Monday 5 September 2016 between 13.00 and 14.00 for a live web chat with Lucy Dames, specialist nurse organ donation at the Trust, to mark Organ Donation Week. Lucy will answer your questions and address some common misconceptions around organ donation.

Everyone, including patients, the public, GPs and other health workers is invited to submit questions. All questions can be submitted anonymously.

You can submit your questions here from 12.30 on Monday 5 September, then Lucy will join us at 13.00 to get started. You're also welcome to email questions to web@imperial.nhs.uk or tweet your questions to @ImperialNHS.

You can also follow the chat through Twitter by following our Twitter handle @ImperialNHS.

Lucy Dames: 
I'm a specialist nurse in organ donation, based at Imperial College Healthcare NHS Trust as part of the London Organ Donation Services team. My role is to support families in making decisions regarding organ donation and to guide them through the process.
 
Lucy Dames: 
This week is Organ Donation Week across the UK - we're raising awareness around the theme 'turn an end into a beginning' to encourage more people to become organ donors.
 
Comment From Anon 
How do I become an organ donor?

Lucy Dames: 
You can become an organ donor by going to www.organdonation.nhs.uk or phone 0300 123 23 23.
 
Comment From Guest 
I don't like the idea of donating my eyes!!! Is there any way I can say 'yes' to donating some organs and 'no' to others???
 
Lucy Dames: 
When you sign up to the Organ Donor Register you can select which organs and tissues you wish to donate in the event of your death. If you change your mind about these at any time you can amend this by contacting at the weblink and phone number above.
 
Lucy Dames: 
Organ donation is a relatively rare event in the UK, because although around half a million people die each year, only around 1% do so in circumstances which allow organs to be donated.
 
Comment From question 
how do you convince someone to become an organ donor??
 
Lucy Dames: 
It's not my job to convince people to become organ donors, but to give them the information to allow them to make a decision for themselves. The most important thing is to tell your next of kin or your loved ones your wishes around organ donation, whether you choose to be a donor or not.
 
Comment From ry 
are any organs more 'in demand' than others?
 
Lucy Dames: 
Most people on the transplant waiting list are waiting for kidneys, however they can be supported on dialysis until a kidney transplant becomes available. We have a shortage of heart and lung donations, unfortunately a lot of the patients who need these die while they're waiting.
 
Comment From Ruth 
Is there an age limit to donors
 
Lucy Dames: 
Any patient who dies could be considered for donation. At present we consider patients up to 85 years for solid organ donation, but with regards to tissue donation this varies. The oldest eye donor was 103.
 
Comment From JJ 
what happens to people who can't get the organs they need??
 
Lucy Dames: 
Unfortunately if patients are in need of a transplant, this is usually because they will die without one. There are ways to maintain certain organs or perform the organ function for a short period of time, but this cannot be sustained long term.
 
Comment From Vivienne 
When you register are you registered across the UK? So if someone a few hundred miles away needs your organs they will get them?
 
Lucy Dames: 
The NHS Organ Donor Register is a UK-wide register. It is quite possible that a donated organ will go to a patient several hundred miles from where they live. The most important thing is to get the best match between the donor and the recipient.
 
Comment From londoner 
What's the demand like in northwest London?

Lucy Dames: 

Demand for transplants is high across the UK. 1 in 3 patients waiting for a transplant die while waiting. In London only 25% of the population is registered on the organ donor register. London has a bigger population of people with a black, asian and minority ethnic background, who can be more susceptible to conditions that lead to a need for transplant, such as diabetes and hepatitis. Therefore we need more people from these backgrounds to sign the organ donor register.
 
Comment From JL 
May more Black and Asian patients are waiting for transplants but there are far fewer donors from Black and Asian families: what are we doing to encourage more donors from ethnic minorities?
 
Lucy Dames: 

NHS Blood and Transplant are working with people from black, asian and minority ethnic backgrounds to support and encourage discussions around organ donation.
 
Comment From anon 
what are the specific circumstances required at the time of death for organs donation to be facilitated? Do hospitals do anything to encourage and support this?
 
Lucy Dames: 
For a patient to be a solid organ donor they have to be ventilated prior to their death - they have to be supported on a breathing machine. Therefore most organ donors come from intensive care units or emergency departments. There is guidance from NICE (National Instiitute for Clinical Excellence) which advises hospitals how to identify and support patients to become organ donors. Specialist nurses are available 24/7 to advise hospitals and support units which have a potential organ donor on their unit.
 
Comment From Paul 
Do you think England should adopt a soft 'opt out' system for consent to organ donation similar to what Wales introduced in December 2015? And do you think it would lead to in an increase in donation activity?
 
Lucy Dames: 
NHS Blood and Transplant are monitoring closely the effect of the new system in Wales. If it is shown to lead to an increase in organ donors, then this might be considered an option in England in the future. But at this time our priority is to work with the system that we have and encourage people to talk about their donation wishes.
 
Comment From G 
On SystmOne,some patients wants to donate organ but we cannot record this on patients record except patient already filled their consent form from GMS1 form, is this sufficient. We have 7000 + patients in SystmOne at the moment.
 
Lucy Dames: 
The best way for our patients to express their wish to be a donor is to join the NHS Organ Donor Register. All specialist nurses for organ donation have access to this system and can check a patient's registration. If you have a patient that you wish to be a donor, please contact us on 07659 100 103.
 
Comment From
Are there any religions that don't allow organ donation?
 
Lucy Dames: 
There is no major religion that is opposed to organ donation. In practice it sometimes comes down to an individual's personal beliefs. We work closely with faith leaders in supporting families.
 
Comment From Jeremy 
Approximately how many people donate organs who have died in Imperial as a Trust every month or year ?
 
Lucy Dames: 
That varies from month to month. We can't ever predict, however Imperial as a Trust has approximately 25-30 donors per year on average.
 
Lucy Dames: 
This is a question from our office: If I sign up to be an organ donor, would my organs ever be used for research instead of transplant? Would my family be told if this were the case?

Lucy Dames: 
Organs are only ever removed for the purposes of transplantation. However, in certain circumstances where they are found to be unable to be transplanted, they can be used for research purposes. But the donor family will have already had to consent to this prior to donation. All donor families will be told the outcome of their loved one's donation if they wish to know.

Comment From Stuart 
Hello, do you know if the NHS Organ Donor Register is kept up to date? I have had to register various times and have not changed contact details in the interim, however there never seems to be a record of my wish to be a donor.
 
Lucy Dames: 
The NHS Organ Donor Register is regularly updated by NHS Blood and Transplant. It is good practice to contact them if and when your details change, for example if you move, change your name or change your donation wishes, to ensure the record is up to date. Occasionally if lots of people have registered at the same time there might be a delay in the system being updated.
 
Comment From VL 
Can organ donation only happen from people who die in intensive care units?
 
Lucy Dames: 
Basically no. Patients that become solid organ donors have to be ventilated prior to their death therefore this means they are usually from intensive care. However, patients from the emergency department and other areas of the hospital have sometimes become organ donors. If a patient is identified in a different area of the hospital, where possible they will be transferred to intensive care prior to the donation.
 
Comment From ICU Nurse 
What career path did you follow that led you to become an Organ Donation specialist. Are there any specific requirements for the job?
 
Lucy Dames: 
Most specialist nurses for organ donation (SNOD) were intensive care nurses prior to taking up the role. However, emergency department nurses and theatre nurses have also been recruited into the job role. The reason for the ITU background being the most prevalent background is that most organ donors are cared for in intensive care. If you are interested in becoming a SNOD, you need to have a critical care background and ideally your intensive care course as well as management experience.
 
Comment From Clare 
Can next of kin decide, either way, against the wishes of their family member?
 
Lucy Dames: 
If a patient is on the Organ Donor Register, we will let their family know if they are a potential donor. We encourage them to support their loved one's wishes, however there are occasions where families go against their loved one's wishes and so the donation won't proceed. The reasons for this will be discussed and explored by the specialist nurses. This can be for example if they didn't previously know that their loved one was registered. Therefore we encourage people to sign the register but discuss this with their family.
 
Comment From Vivienne 
If you have registered but not all of your family are aware, would this cause problems with donation?
 
Lucy Dames: 
In terms of consent for donation, we will alway follow the Human Tissue Authority's regulations on hiearchy of consent. If a family are divided in a decision, we will provide them with the information and explore the issues behind this division. Ultimately we want a consensus for family harmony.
 
Comment From guest 
how should you talk to your loved ones about becoming organ donors?
 
Lucy Dames: 
One thing to bear in mind is that most people will be in need of a transplant rather than die in a way that allows them to be a donor. If you or your loved one needed a transplant you would hope that an organ would be available. It is never easy to discuss issues around death but it is a very important conversation to have. You can visit www.organdonation.nhs.uk for advice on how to have that conversation.

Comment From A 
I used to work in ITU and have cared for many patients who were potential donors as well as gone on to donate. I have always found that if we at the bed side take the time to educate the NOK and family, the outcome is generally more positive.
 
Lucy Dames: 
For families to make a positive decision about donation, they need to be fully informed about the reasons their loved one has died or is going to die and how organ donation is a possibility for them. This is usually a multidisciplinary team effort between the doctors, nurses and specialist nurses.
 
Comment From twitter 

Why don't the NHS Blood and Transplant actively educate the public about living donation like they do about deceased organ donation?
 
Lucy Dames: 
There is information about living donation on the NHS Organ Donation website https://www.organdonation.n... In terms of living donation, people can only donate certain organs and they have to be a very close match to the recipient, so this is often a family member. It's discussed on a case by case basis.
 
Comment From LJ 
How can I make sure my family do not over-ride my desire to be an organ donor! Its not that I dont trust my wife but ... her views absolutely should not matter if I am on the register.
 
Lucy Dames: 
Perhaps you should discuss your decision with your wife and find out what her reasons might be for going against your wishes. If you are on the Organ Donor Register then the specialist nurses will always try and support your wishes and encourage your family to as well.
 
Comment From G 
We have loads of patients that wanted to be on the organ register but they only give their consent from the GMS1 form. It is not advertised in our dept to contact nhs organ register. Probably, it will help raise the profile for organ donation nationally if ALL GP Practice in the country especially in spine ie. SCR, NHS Portal if this can be recorded on those systems so anyone that have smartcard in the country can see it.
 
Lucy Dames: 
If you would like to contact me after this, we can discuss how we can take this forward: lucy.dames@imperial.nhs.uk. If a GP practice registers a patient as an organ donor this goes onto the national NHS Organ Donor Register.
 
Comment From J 
but "consensus for family harmony" means depriving the donor of their explicit wishes, desires and autonomy. surely ..

Lucy Dames: 
When we encourage people to sign the register we encourage them to discuss this with their family. There can be an occasion where someone has changed their mind about becoming a donor and discussed this with their family but not updated their registration. This is why the specialist nurses in organ donation spend time with families to help them make a decision. In practice families don't regret supporting their loved ones wishes, but have been known to regret going against them.
 
Lucy Dames: 
Thank you all so much for your questions. Unfortunately we've run out of time for today. If you have any more questions then you can email them to web@imperial.nhs.uk and we can pass them on to Lucy. 

If you wish to become an organ donor then join the Organ Donation Register at www.organdonation.nhs.uk or by calling 0300 123 23 23 and most importantly, discuss this with your loved ones.