Organ Donation Review - Ministerial Response - 10 July 2018

Findings

Comments

1

Organ  donation  saves  and  enhances lives.  The  percentage  of  Jersey  adults currently  on  the  NHS  Organ  Donor Register (14%) is markedly lower than the UK (38%).

Agree that organ donation saves lives and can improve the recipient's health and quality of life.  The  number  of  Islanders  on  the  NHS Organ  Donor  Register  is  disappointing,  but should increase with the new approach.

2

A  likely  reason  for  the  difference between Jersey and the UK is the fact that, in the UK, applicants can join the Register  through  the  driving  licence application  process,  which  has  not proved possible in Jersey.

Agreed.

3

An  opt-out  organ  donation  system  is likely to increase the number of potential organ  donors,  but  so  far there  is  little evidence to suggest that it will increase the number of organ donations unless it is accompanied by other measures, such as public awareness campaigns.

Agree  that  a  high-profile  public  information and  awareness-raising  campaign  is  key  to making  as  many  people  as  possible  think positively about organ donation while they are fit and well.

4

The  Comité  des   Connétable s  has  not transferred the information regarding the 14,720 people who indicated their desire to register as a donor to the NHS Organ Donor  Register.  The  Comité  des Connétable s has indicated that the data will  be  transferred  within  the  next 2 to 3 months.

The  Comité  des   Connétable s  is  working  to amend the driving licence application form to remove organ donor registration and to manage the  change  to  the  opt-out  system,  cease collection data and then complete the transfer of  data  held  to  NHSBT  via  a  secure  data transfer.

5

Changing from an opt-in to an opt-out organ  donation  system  represents  a fundamental  change  to  the  Island's approach  to  organ  donation.  The  draft Law does not contain details of the opt- out mechanism.

In response to Scrutiny's comments, the draft Law  adopted  by  the  States  included  an amendment  that  requires  the  States,  by Regulations,  to  make  provision  for  the registration of express consent, or a decision not  to  consent,  to  a  specified  activity.  This provision  is  now  mandatory  rather  than discretionary as previously drafted. In practice, it is likely that individuals will register their

Findings

Comments

decision with the NHS Blood and Transplant service, which currently maintains the single UK-wide  register  that  records  whether  an individual has opted out (or opted in) to organ donation.

6

In  the  absence  of  a  specific  opt-out mechanism,  the  decision  to  donate organs will always lie with families or next-of-kin,  even  if  an  individual  has previously  expressed  a  wish  to  donate their organs.

Next-of-kin have to give permission for organ donation  to  proceed,  so  ultimately  donation would not go ahead if the family objected. This is why it is important that individuals let their family  know  of  their  wishes  in  advance,  so they are less likely to be overruled.

7

In light of the draft Law, it is important that  families  discuss  their  choice  with regard to organ donation.

Absolutely.  One  of  the  Minister's  aims  in facilitating  a  change  in  approach  to  organ donation was to encourage Islanders to have the  conversation  with  their  families  about donating while still fit and well, rather than leaving it until the emotive aftermath of a fatal accident  or  illness.  As  the  Minister  said: A few  words  now  can  make  the  difference later on.'

8

Clinical  practice  associated  with  the retrieval, transfer and transplantation of organs  will  not  change  as  a  result  of moving  to  an  opt-out  organ  donation system.

Agreed.

9

How  families  are  approached  to  gain consent to donate a relative's organs will be crucial under the new opt-out system. Ensuring  the  right  people  with  the appropriate  training  are  available  will maximise the chances that a family will consent to their relative's organs being donated.

Agreed.  When  the  possibility  of  organ donation is identified, a trained specialist nurse in  organ  donation  comes  to  the  Island  to oversee arrangements and support the donor's family. These arrangements continue.

10

The  protections  for  vulnerable  groups enshrined in the  draft Law – including for children, people lacking capacity, and recent  arrivals  to  the  Island –  are appropriate.

Agreed.

11

A  high-profile  and  sustained  public awareness campaign will be essential in ensuring that (a) the public are aware of the change from an opt-in to an opt-out system; and (b) there is an increase in the percentage of persons registering on the NHS Organ Donor Register.

Agreed.

Findings

Comments

12

Wales, which recently introduced an opt- out organ donation system, spent roughly £3.4 million  on  a  public  information campaign. The Minister is proposing to spend £20,000 in Jersey. This is roughly £1.10 per person in Wales compared to roughly £0.20 per person in Jersey.

Noted (see recommendation 5 overleaf).

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completion

1

The Comité des Connétable s should transfer the data it has on applicants' organ donation preference to the NHS Blood and Transplant service within 2 to

3 months. If it is unable to transfer the data it should write to all the people affected, notifying them of the situation and encouraging them to sign the NHS Organ Donor Register directly.

H&SS

Accept

The  Minister  for  Health  and Social Services understands that the Comité des Connétable s has consulted  with  the  Minister for Infrastructure  to  amend  the driving licence application form to  remove  organ  donor registration; the amended form is being drafted and will be ordered shortly.  When  this  is  available, parishes will cease to collect the data, and the Minister has been informed  that  the  parishes  will transfer data held to NHSBT via secure data transfer.

End September 2018

2

The Minister should bring forward Regulations to the States to provide a means for people to opt- out of organ donation.

H&SS

Accept

The Law as amended means that Regulations  will  be  brought forward setting out how people can opt out.

Before July 2019

3

Family members and next-of-kin must continue to be treated sensitively, with care and respect, as they will ultimately have the final say on whether their relative's organs can be donated.

H&SS

Accept

This will continue to be the case.

Happening now

4

The Minister should ensure that campaign materials are translated into other languages, especially Portuguese and Polish. The campaign should be ongoing and extend beyond the year prior to the change in the Law.

H&SS

Accept

The importance of these points is recognised.

Before July 2019

Recommendations

To

Accept/ Reject

Comments

Target date of action/ completion

5

Wales spent 5 times the amount of money per person on a public information campaign. The Minister should consider increasing the budget in light of the experience in Wales and the fact that Jersey is not able to sign people up to the NHS Organ Donor Register via the driving licence application process.

H&SS

Accept

This point is noted. Wales was the first UK jurisdiction to make the change to an opt-out system, so it was to be expected that it would spend more per head on communicating the change to the Public.  Thanks  to  its  success, there is now more awareness of organ  donation.  Being  a  small island it is easier to communicate with  the  Island's  population. However, if additional funding is required  for  the  publicity  and awareness  campaign,  then  the Minister will seek this additional funding.

Before July 2019