We work closely with NHS blood donation services across the UK, to improve the opportunities for people with genetic haemochromatosis (GH) to become blood donors. We meet regularly with policymakers responsible for donor services in Scotland, Northern Ireland and England.

We're able to share forthcoming improvements to donor services in England, for people with haemochromatosis. A similar initiative is underway in Scotland.

As the Covid-19 pandemic has developed, many people have found it difficult to access secondary care to receive essential venesection treatment. These challenges are increasing, following the recent announcement of “local” and “regional” lockdowns.

Improvements to GH Donor Services in England

Following the launch of the specially negotiated GH scheme in England earlier this year, Haemochromatosis UK has continued to work with NHS Blood & Transplant to monitor the uptake and success of the scheme.

For the first time, the GH donor scheme in England :

• enables people with elevated serum ferritin levels (not in maintenance) to become donors
• enables people over the age of 69 years old with GH to become donors, during CV19
• dedicates 800 monthly appointments, specifically for GH donors
• ensures that GH appointments are made available in proportion to Haemochromatosis UK membership in each geography, to ensure enough appointments are available in areas of high GH prevalence

We continue to meet regularly with senior NHS Blood & Transplant directors. In August, we shared the results of a survey of our members. The survey showed that the May changes had been widely welcomed and were working well in many areas.

However, a number of issues were identified, including :

• Difficulties in registering as a “GH donor” with the Give Blood call centre
• Incorrect advice being provided to “GH donors” by the Give Blood call centre
• Limitations in being able to arrange appointments via the Give Blood website and app
• Various issues with otherwise eligible GH donors being turned away due to incorrect medical records, last-minute appointment cancellations, appointments being offered too far away etc

Haemochromatosis UK has collaborated with NHS Blood & Transplant to document and resolve these issues. This has led to some further refinements to the scheme, which will be rolled out from mid November. Here are some of the highlights :

Ability to book appointments via the Give Blood website

Previously, all GH appointments had to be booked over the phone with the Give Blood call centre. This was sometimes cumbersome and inflexible. From mid November, if you have registered as a GH donor and you have made at least one donation previously, you will be able to arrange appointments on the Give Blood website.

The GiveBlood website will provide a choice of appointments local to you, based on the availability of the special GH appointment slots. You will have access to the same range of appointments as the call centre team, so you can pick a slot that works best for you. You may find that broadening your geographical / travel criteria will enable you to find an appointment quickly.

Ability to book appointments via the Give Blood mobile app

NHS Blood & Transplant are working on changes to enable GH donors to arrange appointments via the Give Blood mobile app. These changes should be available before Christmas, subject to final systems testing.

Additional donor venues in high-prevalence areas

NHS Blood & Transplant have been investing heavily in establishing new, Covid-secure “pop-up” donor venues. These include additional large facilities at Stratford (East London), Twickenham (Surrey), Birmingham and Manchester. You may find it easier to secure an appointment at one of these new, large venues if you are able to travel to them.

These new pop-up venues in and around London have additional capacity for GH donors, too.

• Bexleyheath, Danson Youth Centre, Brampton Road, DA7 4EZ
• Stratford, Westfield Stratford City, E20 1EJ
• Twickenham, Regal House, 70 London Road, TW1 3QS
• Bloomsbury, 16-22, Great Russell St, WC1B 3NN

Improvements in call centre training

NHS Blood & Transplant delivers their phone service with the help of several hundred call centre agents, based in Belfast. Following Haemochromatosis UK feedback, the call centre agents have been re-trained and upskilled to better understand GH and the specifics of the GH donor scheme.

NHS Blood & Transplant are presently training an additional 100 call centre agents to provide additional capacity on their phone lines. This should improve call waiting times, for members who prefer to arrange appointments over the phone.

If you are not already registered as GH donor, you are encouraged to do so. NHS Blood & Transplant will write to all registered GH donors to explain the key changes in your area, in mid November.

Improvements to GH Donor Services in Scotland

Following recent advocacy with ScotBlood management, we are able to share details of some forthcoming changes which we believe will improve the availability of blood donation services to people in Scotland with GH.

Improved Donor Information For People With Haemochromatosis 

SNBTS has agreed to publish specific details on the criteria for GH donors on their website. This went live in late October and can be seen on their website here. Unlike the scheme in England, prospective GH donors must be referred to SNBTS by their consultant or specialist nurse. The referral process is completed on average within 14 days, after which people can book appointments.

Forthcoming Changes from December in Scotland

In December, there will be a further relaxation of the eligibility criteria for GH donors to enable more people to donate. Presently, people over 69 years old who do not have GH are not permitted to donate, due to Covid restrictions. However, GH donors aged 70+ will be able to donate provided they have previously donated or been successfully venesected in hospital.

We are continuing our advocacy that SNBTS accepts donors with serum ferritin up to 1000 u/l, however we are not there yet. Presently, ScotBlood require GH donors to be “in maintenance” to donate. However, in practice, there is no sharing of medical records between the donor service and hospitals or GPs. So, the definition of “in maintenance” is not formally set and is open to flexible interpretation, which may be helpful to many prospective donors.

Look Out for the Joint ScotBlood/Haemochromatosis UK Survey

ScotBlood are aware that roughly 40% of people who register as a donor do not subsequently donate. So, we’re working on a joint survey to better understand any issues preventing people from actually donating.

This will be relayed to all Scottish GH donors by text message (from SNBTS) before Christmas and will be followed-up by an email survey to all Haemochromatosis UK members resident in Scotland.

We encourage you to get involved in this initiative as it should help us all better understand what we can do together to improve access to and choice of donation services in Scotland.

Hints ‘n tips

We have a few tips to improve your experience as a GH donor under the NHS BT scheme in England.

Plan ahead

It’s possible to book several appointments in advance. Many donor venues book-up 6 to 12 weeks in advance. By planning ahead, you may be able to book available appointments up to 6 months in advance. You do not need to donate and then re-book. You can mix and match donor venues. You can mix and match venesection at hospital (if the service is running) with blood donor sessions. You are in control!

Be flexible

If you are willing to travel a few miles further for an appointment, the number of appointments to choose from should increase. Consider if one of the new, large donor venues is a practical option for you.

If you live in a rural area…

…bear in mind that many rural donor sessions run infrequently (once every 2-3 months). If you are willing to travel to a local town or city for an appointment, there are more sessions available there.

Finally…

Remember, the blood donation service do not monitor your serum ferritin or transferrin saturation levels. So, it’s important to arrange blood tests with your GP (or hospital) to ensure you don’t become over-venesected, which can cause anaemia.

We welcome members’ feedback on this scheme and will continue to collaborate with NHS Blood & Transplant to refine and improve the scheme.