The aim of the survey was to understand the immunology professional community’s views on the supply of immunoglobulin (IG) to patients following the decisions made by NHS England (NHSE) regarding the commissioning framework introduced in May 2017 for IG products. This framework fundamentally promoted switching patients from one IG product to another based on cost and restricted the number of products made available to PID patients living in England.

PID UK has set out its concerns previously regarding NHSE’s decision making and wanted to know if these were shared by this stakeholder group.

The survey was open for one month from November to December 2017 and was made available to centres via an email invitation by PID UK and through the Allergy and Immunology Nursing Group. PID UK would like to thank those who took part.

Survey results

Thirty-nine medical professionals (doctors and nurses) took part in the survey representing centres having less than 30, to more than 200 patients receiving IG therapy.

Key findings and free-text quotes

  • 94% of respondents agreed that the NHS England commissioning decisions had NOT promoted a secure steady stock of IG products for patients.

‘Our main concerns regarding using a limited number of products and switching was the impact on the supply chain and product availability, this is already starting to happen. IN addition the impact on patients and staff and the uncosted impact of staff time and patients time on the need to switch.’

‘This solution that is suggested now will lead to a shortage in immunoglobulin and will have a great impact on the management of patients with immunodeficiency. This in turn will have a great impact on workload and can lead to stopping of home therapy training to accommodate all the changes of products.’

  • Only 5% of respondents thought that they were consulted adequately about the NHS England changes to IG provision for patients as implemented in May 2017.
  • 86% of respondents agreed that as patient advocates, medical professionals should have been asked for their opinion on the NHS England commissioning framework for immunoglobulin.

‘There has been no consultation with the UKPIN community. This has been a top down heavy handed approach.’

‘Very poor consultation process. Rushed implication. Huge waste of stretched resources.’

‘I can understand the need to manage both costs and supply. However, this needs to be done in consultation with those most interested in ensuring both financial and supply viability – clinical immunology practitioners. A good understanding of the history of supply issues in immunoglobulin and the difficulties (both practical and clinical) in switching patients is vital in creating the best ongoing policy on Immunoglobulin supply.’

  • 97% of respondents indicated that NHS England had NOT understood and costed the resource implications for centres switching their patients to new products.

‘There is much more to the appropriate use of Immunoglobulin than just the cost. This is important in a resource limited NHS but it is false economy to make decisions with a significant lack of understanding of the implications.’

‘As a lead nurse specialist responsible for managing a large home therapy group among other duties this initiative has made our patients and us worried about the future supply of Immunoglobulin products. Whilst I completely understand we need to look at ways of reducing the cost implication of using Immunoglobulins, other measures to reduce use could have taken place before this radical decision. Such as more regular review and dose titration (esp for neurology patients using high doses).’

‘The commissioning process undertaken by NHSE has been frankly idiotic. It seems that an accountant, with eyes only for costs in £/g, has made key decisions without considering the wider implications of those decisions.’

‘The approach of NHS England ignores key principles of long term patient care and flies in the face of the Service Definition. Consultation has not occurred and the supply destabilised. This decision should be reversed.’

  • All respondents strongly agreed that medical professionals should have access to a wide range of IG products for their patients so that treatments can be individualised.
  • All respondents indicated that the NHS had NOT understood the impact of patients concerning switching them to new products.

‘Takes time, effort and can affect patient care constant switch of products.’

‘Inappropriate use of staff time and not in patients best interests.’

  • 97% of respondents agreed that exposing patients to different donor pools on a regular basis is NOT an acceptable way of managing a life-long therapy.

‘No consideration to HIV / Hep C scandal of the 80’s – loss of trust of patients will be massive. Feels we are now at risk of a similar disaster.’

  • 92% of respondents indicated they would disagree to switching patients again if a new NHS England new commissioning framework leads to this outcome in the future.

‘It is not clinically justifiable.’

‘This would be very foolish.’

‘It unnecessarily exposes individuals to different donor pools, and takes up significant nursing and organisational time to bring each patient into an already overstretched department for multiple infusions of the new product, to ensure it will be tolerated long term. It is a very inefficient use of time and resources.’

‘Really bad patient experience and we just do not have the resources to facilitate switching products on a regular basis.’

‘It causes anxieties for patients, increases the risk of having side effects if the replaced medication is not so well tolerated. The patients need extra time for the new products, we also do screening bloods that will increase the number of tests the lab staff have to undertake. It will affect nursing time as we have to supervise the switch and bring in home therapy patients for test infusions. Greater risk of drug errors (prescribing and dispensing) if the medications are being changed regularly.’

‘Current best practice is not to change Ig product unless clinically indicated or is in the best interest for the patient.’

  • 86% of respondents indicated that NHSE had NOT explained the reasons behind the change in policy in an honest and helpful manner.
  • 92% of respondents agreed that the views of 4 nations should be taken into account to avoid a postcode lottery of quality.

The results have been shared with NHS England Immunology and Allergy Clinical Reference Group, NHS England commissioners, the Allergy and Immunology Nursing Group and PID UK members.

Posted June 2018