UK Primary Immunodeficiency Patient Support (UKPIPS)

06/03/2025

UKPIPS HELPING TO MAKE HISTORY

After more than 25 years, plasma medicines made from UK donors are being used to treat patients again. UKPIPS worked alongside other organisations to campaign for this to happen.

It is a brilliant step forward for people living with rare diseases, immune deficiencies, and critical conditions.

From today (6/3/25), many patients who rely on immunoglobulin will access UK-sourced treatments.

Supplies of albumin medicine will also be used in trauma, childbirth, and liver treatment.

Since the government gave the go-ahead for plasma medicine to be made from UK donors again in 2021, the NHS has established a new medicine supply chain, taking donations through to manufacture and infusion in hospitals.

But the need for plasma medicine is growing fast, estimated at about 7% every year.

You can help the NHS make more vital medicine by becoming a blood or plasma donor today –

Become a plasma donor. Safe a life, give plasma. Find out more about plasma donation.

28/02/2025

UKPIPS is proud to support Rare Disease Day 2025

12/11/2023

Call for Volunteers and potential Trustees

UKPIPS has been through some trustee changes this year. With Margaret Fuller having retired from the charity, after many years of support as both a trustee and volunteer and (with Paul Harries and Erald Kuniqi standing down) we now have a completely new management team comprising David Cohen, Sue Dimmock and Gary Narborough. Sue and Gary both have a primary immune deficiency as do David’s wife and son.

We are in a position where we need to strengthen the charity and so this is a call to see if you can help UKPIPS develop as a charity, or might know someone who could? We need people who really believe in the charity and who feel that they can commit some time to giving something back, to help us make a difference for all those who live with PIDs.

We are looking for volunteers who have skills in areas like:

· Fundraising

· Grant applications

· Marketing and liaison of our social media platforms

· Benefits, Pensions, DWP, PIP etc

· Pharmaceuticals

· Understanding and co-ordinating younger peoples’ needs from the charity

· Trusteeship

This list is not exhaustive - we’d love to hear from you if you feel you could help in any way at all or have other skills and suggestions too. Roles can be adapted to suit whatever time you can offer.

Please email [email protected] to arrange an informal chat and to get further information.

Thank-you for considering this and we look forward to hearing from you.

As a charity UKPIPS depends on donations and fund raising to enable us to work for you. If you can, please donate to our funds. Click on the donate button on our webpage (www.ukpips.org.uk/) for ways to do this. We would also love to hear from you if you can organise any fund-raising activities as these bring people together and are usually great fun as well as raising money for our work.

01/11/2023

NHS ENGLAND - HOW TO GET COVID TESTS FROM 6th NOVEMBER 2023

If you live in England, from 6th November you will no longer be able to order or receive lateral flow devices by going online or through calling 119. NHSE released the following statement on 31st October:

How to get hold of COVID tests

· If you're eligible for COVID-19 treatments, you should keep rapid lateral flow tests at home.

· From 6 November 2023, eligible patients will be able to pick up free rapid lateral flow tests from a local pharmacy. This will replace the current online and telephone ordering services for free lateral flow tests provided by GOV.UK and 119.

· When picking up lateral flow tests, the pharmacy may ask you questions about your medical history to confirm you’re eligible for free tests. If you have a copy of a letter or email sent to you by the NHS that says you’re eligible for COVID-19 treatments, please bring this with you. A letter or email is not essential, but it will help to more easily and quickly confirm your eligibility.

· Someone else can collect free tests on your behalf. If you do not have a friend, relative or carer who can do this for you then you may be able to book a volunteer responder by calling 0808 196 3646.

· Anyone collecting free tests on your behalf should provide the pharmacy with your details and any relevant letters or e-mails about COVID treatments, if you have them. The required details include:

The medical condition(s) confirming the patient’s eligibility
The patient’s NHS number (if available)
The patient’s full name
The patient’s date of birth
The patient’s address

How to get treatment, if you test positive

· If you have any symptoms of COVID-19, take a test as soon as possible, even if your symptoms are mild. Only take a test if you have symptoms.

· If your test result is positive, call your GP surgery, NHS 111 or hospital specialist as soon as possible. They will be able to decide if you need a referral for an assessment for COVID-19 treatment.

· If your test result is negative, but you still have symptoms of COVID-19, continue to test once a day for the next two days.

19/10/2023

NHS England – ACCESS TO LATERAL FLOW TESTING / DEVICES IS CHANGING

For those eligible for Covid treatments, you will no longer be able to access lateral flow devices online or through calling 119, from 7th November 2023. From this date, the online service is closing, and boxes of lateral flow devices should be available through your local community pharmacy instead.

NHSE released the following statement on 17th November:

"From 6 November, arrangements will be in place to pick up free lateral flow tests from community pharmacy for patients who are eligible for COVID-19 treatments. This will replace the current process of ordering tests online and via 119. The NHS.uk website will be updated to reflect this change in due course".

At this stage we do not know how this new process will operate in detail but will update you as soon as we receive any further information.

06/07/2023

UKPIPS celebrates 75 years of the NHS today. We send our deepest thanks, admiration and support to all those dedicated professionals, support, back office, and research staff who work to keep us going on a daily basis. They are always there when we need them, when we're struggling to keep going and when we're admitted with some very serious infections. Thank you to each and every one of you from each and every one of us.

Find information and advice on health conditions, symptoms, healthy living, medicines and how to get help.

06/06/2023

UKPIPS FUNDRAISER (30th June to 2nd July, in Swavesey, Cambridge)

Will you be in the Cambridge area between Friday 30th June and Sunday 2nd July?

If so, why not head over to the White Horse Inn in Swavesey where you will find another fun-filled weekend of pinball fundraising for UKPIPS.

UKPIPS is very grateful to Jodie and Joe for all their ongoing support to the charity.

27/05/2023

UKPIPS Community Event, 11th February 2023

UKPIPS is pleased to share a recording of its community event on 11th February 2023.

Our keynote speaker was Professor Alex Richter, Director of the Clinical Immunology Service, University Hospitals Birmingham. Alex updated us on her current work including the COVAD study looking at COVID immunity in antibody deficiency patients, and how she sees the future for patients 'living with COVID'. UKPIPS volunteers also gave an insight into some of the work they've been doing for our community.

The event can be viewed on here:

Our keynote speaker at this event was Professor Alex Richter, Director of the Clinical Immunology Service, University Hospitals Birmingham. She told those at...

27/04/2023

IT'S PLASMA DONATION WEEK

Many people with immune-deficiencies rely on plasma derived therapies to keep them infection free. Immunoglobulin replacement products can be fractionated from plasma and blood donations from the very generous people who take their time to donate.

UK plasma can now be collected and will soon be utilised following a 20 year ban.

If you are interested, thank-you!! Every donation makes a difference to someone's life. There's a link to the NHSBT plasma donation site below:

Join the 12,000 life-saving plasma donors who make medicines to treat 50 diseases
Search ‘donate plasma’ to register now
Someone with an immune disorder needs around 130 donations a year to help save their life.
New and existing donors and recipients can share their plasma donation/transfusion photos and stories using hashtag on Twitter and Instagram

Become a plasma donor. Safe a life, give plasma. Find out more about plasma donation.

07/10/2022

Quality in Primary Immunodeficiency Services (QPIDS)

Is your Immunodeficiency Service accredited? If not, why not?

QPIDS is run through the Accreditation Unit at the Royal College of Physicians. It works closely with clinical services across the UK, Scotland and Ireland to support improvement in immunodeficiency services - ultimately to enable better quality of care for patients.

QPIDS now has 39 registered services, 22 are accredited with 17 working towards their accreditation.

Accredited services must prove they are adhering to the QPIDs standards by submitting evidence for their annual reviews, in their fifth year they are required to submit for reaccreditation.
If a service is accredited, it means they have met a rigorous set of standards, which have been agreed nationally with clinicians, managers and patients. To meet the standards, services must have ensured patients are involved in decision-making about their care, monitoring of clinical performance and carrying out audits to benchmark and improve, providing training and support to the staff working in the service and learning from incidents to prevent harm.

QPIDS have created a video for patients explaining in more detail what the accreditation pathway entails. You can view this video on the QPIDS website (https://www.qpids.org.uk/information-for-patients)

QPIDS stands for quality in primary immunodeficiency services. QPIDS is an accreditation programme for primary immunodeficiency (PID) services across the UK and Ireland.