Update – Potential impact of the Northern Ireland Protocol (NIP) on Kidney Patients
Any disruption to the importation of medicines or medical devices into Northern Ireland at the end of the current derogation period – 31 December this year - could have devastating consequences for kidney patients.
On behalf of kidney patients we have written directly to Lord Frost, Minister of State at the Cabinet Office with direct responsibility for Brexit, laying out at length detailed concerns about the potential which supply disruption could have for dialysis patients, kidney transplant recipients, those waiting on a transplant and those who rely on medication to manage their kidney conditions.
We have also engaged with elected representatives, raised concerns directly with Department of Health Officials as part of our ongoing participation in Post Transition Period Stakeholder Calls as well as through our membership of the Brexit Health Alliance.
Throughout the current negotiations Kidney Care UK will continue to lobby on behalf of patients to ensure that their voices and concerns are heard.
Good news about dialysis treatment in the EU.
Following our long campaign, a special scheme had been set up to pay for dialysis care when travelling in the EU if there was no Brexit agreement. However, on Christmas Eve, the EU UK Trade and Cooperation Agreement was made and this special scheme is no longer needed. This is better news as it means that all UK residents will be able to use the EHIC scheme to receive emergency healthcare in the EU; for kidney patients, you can continue to access dialysis, or other specialist treatments like oxygen therapy when you travel in the EU using your EHIC card. If your EHIC card has expired, you can apply for a new one, which will be renamed the GHIC, with GHIC standing for ‘Global Healthcare Insurance Card’. As previously, this does not replace the need for you to take out travel insurance but it does mean that the cost of your dialysis will be covered if you dialyse at a public unit. As before, you may need to make a contribution towards the cost of dialysis because of the unit/country where you were having treatment, but in most cases it will be free of charge to you.
The government has published advice which says this:
The agreement we have reached with the EU ensures that UK residents will continue to have access to emergency and necessary healthcare when they travel to the EU, operating like the European Health Insurance Card (EHIC) scheme, from 1 January 2021.
Our new UK Global Health Insurance Card (GHIC) will be available from the new year in recognition of the new agreement with the EU, replacing the existing EHIC. However, people will still be able to use their EHIC after 1 January 2021 when travelling to the EU, as current cards will remain valid until their expiry date. Those travelling to the UK from the EU will also be able to continue to use their EHICs.”
It's quite something that the full Brexit withdrawal agreement includes dialysis as an example of treatments which can be covered. Kidney Care UK would like to thank all of you who got involved with the campaign to ensure that the travel needs of kidney patients were not forgotten. It really makes a difference.
There are some other details which we will update on this page when we have further information. The EU UK Trade and Cooperation Agreement does not cover Switzerland or the EEA EFTA States, which are Iceland, Liechtenstein and Norway. However, there is a plan to agree new arrangements on social security coordination with Switzerland and the EEA EFTA States that would further extend reciprocal healthcare cover. Should you have questions about these countries please let us know as there are temporary arrangements in place.
The Government has announced an interim arrangement for UK residents to receive cover for life-sustaining treatment when they travel to the EU after 1 January 2021 if a deal for reciprocal healthcare is not reached by then. This includes dialysis treatment, equipment and medication normally given during dialysis, such as tubing, needles, and drugs. We hope that EU dialysis centres will accept patients and then recharge the NHS as they do now, although some centres may ask patients to pay upfront in which case they will have to reclaim the funding themselves. We know this is not ideal but it is a significant step.
The travel scheme is to be limited to six weeks a year. People will still need to get travel insurance for their trip as it won’t cover for example a broken leg. The government wants a reciprocal healthcare arrangement and has put the legislation in place for this to happen if a Brexit deal is agreed, which would be better for patients. However, this alternative, which will last throughout 2021, is being made in case that does not prove possible. In the official statement the Government says that it “will introduce the scheme with the intention that it is used by individuals who are certain to require treatment while abroad, such as regular dialysis, oxygen therapy or certain types of chemotherapy. The Government recognises that these ongoing, routine treatment costs can be expensive, and makes travelling abroad extremely challenging for many people.”
There will be more details on how the scheme works, which we will share as soon as we get them.
Those of you who have been following us for a while may recall that in 2019 legislation was put into place to allow bilateral reciprocal healthcare arrangements to be made but these did not go forward because the transition period was agreed instead. They have been updated as part of the Reciprocal and Cross-Border Healthcare (Amendment etc.) (EU Exit) Regulations 2020, which were debated in the House of Commons and House of Lords recently in order to provide clarity on what they cover, which is for example the rights of people already settled in their various EU countries.
This summary is helpful:
“Reciprocal healthcare arrangements with the EU have continued during the transition period. This means that people will see no changes in their access to healthcare for the rest of the year. From 1 January 2021 healthcare arrangements will also continue for those within the scope of the withdrawal agreement.…. State pensioners and workers who have moved from the UK to the EU or vice versa, and are residing there before 31 December 2020, will have lifelong reciprocal healthcare rights for as long as they remain in scope of the agreement. That includes the use of the European Health Insurance Card, the EHIC. The agreement also protects those who are in the EU on a short stay at the end of the transition period. For example, someone who travels to an EU country before the end of the year can continue to use their EHIC there until they return to the UK. UK students on a stay in the EU, beginning a course of study before 31 December 2020, can also use their EHIC in that country for immediate and necessary healthcare for the duration of their course. Finally, people receiving planned treatment can commence or complete their treatment if authorisation was requested by 31 December 2020.”
However this does not cover future reciprocal healthcare arrangements, which are subject to ongoing negotiation with the EU. The government has once again stated that it would like arrangements in place for e.g. tourists and short-term business visitors. They say that “should these discussions not conclude with a healthcare agreement, we will continue to look at this issue carefully” and “we would seek to agree reciprocal arrangements with EU and EEA countries bilaterally. But we cannot start these discussions until the negotiations with the EU have concluded.”
We will continue to ask that arrangements for EHIC are made. We are grateful to Baroness Thornton and Baroness Ludford for citing the Kidney Care UK dialysis concerns within the debate, and for Liz Kendall MP raising these concerns at the equivalent debate in the House of Commons the week before.
There is one exception, which is Ireland. There is progress on agreeing a healthcare arrangement with Ireland, under the common travel area. These arrangements will mean that residents of the UK and Ireland can continue to access necessary healthcare when visiting the other country.
We will continue to update you if there is news on the EHIC through this page.
With deadlines looming towards the end of the transition period Kidney Care UK continues to raise the needs of kidney patients, which are eloquently highlighted in this blog by dialysis patient Anna Lee-Potter - Covid-19 or Brexit Worries? There’s been some media coverage recently which rightly highlights that ‘Protecting patients cannot be an addendum reached in early 2021, it’s a day-one issue for the more than 500 million citizens across the UK and EU…and that the days remaining for the EU and UK to take action to protect patients are numbered’. We acknowledge that the pressures of the Covid-19 pandemic are huge, but the protection of medicine, consumables and equipment supplies, plus the right to travel must not be lost.
For the past 4 years we have consistently said the same things about protecting patients and look to the government and negotiators to do so. Our recent EHIC statement is summarised here:
“The impact of not being able to get away on a holiday on your mental wellbeing is huge, we’ve seen how millions of people in the UK have had to handle not being able to get break in 2020 due to Covid-19. For around 30,000 people who are on dialysis in the UK this could become a permanent reality unless reciprocal healthcare arrangements are made after 1 January 2021. Without a replacement to EHIC in our trade deal with the EU, travel in Europe will be out of reach for thousands of patients; they will be left trapped at home as there is simply no health insurance that covers dialysis.” Reaching a free trade deal is not just the right answer for kidney patients, it’s the right answer for all patients in the UK and the EU.
For more detail on what kidney patients need to see from a free trade deal
‘The government has provided a tool to prepare for the end of the transition period to check what you can do to get ready
Please keep in touch with us with your questions and comments on [email protected]
Brexit update - Aug 2020
As we are now moving towards the end of the 2020 transition period, negotiations about the terms of our exit are in the news again. Kidney Care UK is continuing to press for a healthcare agreement which will cover dialysis, as we understand that the European Health Insurance card (EHIC) will no longer be in place for UK citizens. We are working with the Brexit Health Alliance, who have released this briefing (PDF) on healthcare rights for patients, featuring our statement that “Currently, 30,000 people on dialysis can travel throughout Europe and receive their dialysis free of charge because of the EHIC. Even though dialysis is a life-sustaining treatment for kidney failure, it isn’t covered by travel insurance, and without reciprocal healthcare agreements, will cost up to £1,000 per week. The end of EHIC means that a holiday or family visit in the EU will simply become out of reach for many thousands of people.”
It is positive that the UK government has said that it wants a future agreement which will cover treatments like dialysis but this must be sorted out so that we don’t just slip past 31 December with no arrangement in place. So we are talking to MPs and policymakers – and you can help by writing to your MP and letting us know what you’d like to see happen next.
Brexit update - Jan/Feb 2020
In February the government announced a new bill to manage medicines and medical devices - find out more.
Following the general election, the Withdrawal Agreement Bill was introduced to Parliament and a majority of MPs voted in favour of it. We will now be leaving the EU on the 31 January 2020 and then an implementation period of up to 11 months starts. During this time trade deals and other negotiations will take place. The latest possible end date of the implementation period is currently 31st December 2020 and there should be no change in regulatory or customs procedures during this time.
The government expect supplies, including medicines and medical goods, will continue to flow as usual during the implementation period. In addition, the European Health Insurance Card (EHIC) will continue to be valid during this time. This means that that the cost of dialysis and other medical treatment that an individual receives in the EU Member States and associated countries will continue to be covered.
However, we do recommend that people always take out appropriate travel insurance to cover aspects of healthcare the EHIC does not.
The current Withdrawal Agreement which is making its way through Parliament does not establish any replacement for the EHIC system. Instead, this will to be discussed during the transition period.
We will continue to work with Government on Brexit-related issues, including supplies of medicines and medical equipment and to promote continuation of travel to Europe for people living with kidney disease without the threat of having to pay for life-sustaining dialysis treatment.
Brexit update - October 2019
An extension to the date by which the UK will leave the EU has been agreed. This date is flexible, but is currently set as January 31, 2020. During this time the UK Government says that it will continue to move forward on establishing and getting approval for the terms under which the UK will leave the EU. If this is achieved then the final exit date will be set. This date may be followed by a transition period, when trade deals and other negotiations will take place.
The European Health Insurance Card (EHIC) will continue to be valid during the extension period. This means that that the cost of dialysis and other medical treatment that an individual receives in the EU Member States and associated countries will continue to be covered. This may also continue during any transition period if no agreement has been reached on reciprocal healthcare arrangements by the exit date.
We do however recommend that people always take out appropriate travel insurance to cover aspects of healthcare the EHIC does not.
The current Withdrawal Agreement which was introduced to Parliament by Prime Minister Boris Johnson did not establish any replacement for the EHIC system. Instead, this was to be discussed during the transition period. At this point it is not possible to know what will be in any final Brexit deal
If the UK was to leave the EU without a deal despite this extension, the current situation is that the UK will try to secure deals on reciprocal healthcare with individual countries. They have currently done so with a number of countries including Spain and Ireland - healthcare coverage in specific countries.
If anyone has incurred costs in Spain already and had to pay for their dialysis at a public unit, we have been informed that this can be reimbursed via the NHS Business Services Authority on +44 (0) 191 218 1999 or on the NHS BSA website.
The UK Government had previously committed to provide support to the 180,000 UK nationals living in the EU who currently have their healthcare costs paid for by the UK for a six month period following a no-deal Brexit.
We will continue to monitor the situation and work to ensure people living with kidney disease are not at a disadvantage and can continue to travel to Europe without the threat of having to pay for their life-sustaining treatment.
Brexit update - September 2019
We know that many of you are wondering what will happen in kidney care after Brexit.
Update as of 23 September
The Department of Health and Social Care (DHSC) have announced today that in the event of no deal Brexit on 31 October 2019, contingency plans are in place for reciprocal healthcare arrangements. However these do not include kidney patients who wish or need to travel in Europe.
People already living in the EU who have their healthcare funded by the UK, including pensioners and students, will have their healthcare costs covered for six months if we leave without a deal. The UK Government has proposed to each EU Member State that, if we leave without a deal, existing healthcare arrangements should continue until 31 December 2020 in the same way that they do now.
Discussions are ongoing, but if arrangements with all Member States have not been finalised by 31 October, Health Secretary Matt Hancock, has today confirmed the Government will provide support to the 180,000 UK nationals living in the EU who currently have their healthcare costs paid for by the UK for a six month period following Brexit. This includes pensioners, students, those on disability benefits and UK workers temporarily posted in the EU. The Government has also committed to covering the costs of UK nationals in the EU who are in the middle of treatment when we leave the EU for up to a year.
Fiona Loud, Policy Director at Kidney Care UK, comments: "Whilst this announcement shows that some progress has been made on European healthcare arrangements, kidney patients who wish or need to travel in the EU remain in limbo. The government must sort reciprocal healthcare out for the good of all citizens, including kidney patients, after we leave the European Union."
We have been informed by the Department of Health and Social Care (DHSC) that the default position remains that we are leaving the EU on 31st October and therefore they are continuing to plan accordingly.
The government is procuring additional freight capacity, on which medicines and medical products, as ‘Category 1’ goods, have priority access. The Department of Health and Social Care (DHSC) is also leading a procurement exercise for an ‘express freight service’ to deliver medicines and medical products into the country, on a 24-48 hours basis.
NHS England has set out the measures the NHS is taking to prepare the NHS for a no deal EU Exit including the regional variations that will be felt across the country. Roadshows are in progress to communicate preparations to the NHS.
The Department will continue to work with charities, patient groups and other stakeholders to update them regularly as preparations progress. The DHSC has provided email routes to report any shortages of medicines or consumables. If you wish to report any shortages please let us know so we can pass your questions on.
It is very important that you continue to take out travel insurance if you plan to travel.
Planning exercises have been carried out in Kent for traffic management programmes for traffic getting through Kent but also to serve the NHS within the county.
Patients should be aware that there is a possibility of some drugs being swapped for another similar medication in the case of a shortage. It is not safe to swap an immunosuppressant without oversight from a kidney doctor. These are personalised medications prescribed to prevent transplant rejection, and should not be swapped at will. Great care, clinic visits and blood tests will be needed. If you are given any medication you don’t recognise, please refer to your kidney unit.
Kidney Care UK, alongside medical colleagues, have asked DHSC to ensure additional protection for transplant drugs to prevent any chance of this happening and await a satisfactory response. If you do experience any shortages there are dedicated Department of Health groups to report them to, and we are happy to on do this on your behalf
What has Kidney Care UK been doing?
Kidney Care UK takes part in the regular Department of Health and Social Care meetings and calls and shares the updates with you on our website.
We remain concerned about access to dialysis in the EU if we have a no deal Brexit. If there is a managed withdrawal there will be a transition period until December 2020 and you will be able to receive dialysis through the EHIC card. If there is no withdrawal agreement, and no reciprocal healthcare arrangements are made with EU countries before the end of October 2019 then UK haemodialysis patients will not be able to travel in Europe unless they pay. There is no travel insurance available for dialysis, because it is planned life-sustaining treatment for a pre-existing condition. We have worked with Sheffield University to get some clarity on the preparatory work in 5 selected EU countries and have just published this, a report outlining the impact a No Deal Brexit would have on dialysis care for kidney patients visiting selected EU countries.
We have recently written to 45 MPs to ask them to place health at the centre of Brexit negotiations and also to the new Minister with responsibility in this area, Edward Argar. We encourage you to write to your MPs also, copying us on their responses. Thank you to everyone who has done this so far; while Parliament was only open for 5 days recently there were 4 Parliamentary questions raised by different MPs about EHIC and dialysis.
Brexit news is everywhere but it is still not clear yet how it will affect citizens, especially kidney patients. There are several potential issues which may be caused by no deal being arranged, we have a summary of the issues on our page What a No Deal Brexit will mean for kidney patients
See our Open Letter on Brexit for kidney patients for more information
As you may know, we currently have an EHIC card (European Health Insurance Card) which enables dialysis treatment to be given free of charge in state-run units across the EU. This has been achieved by a reciprocal healthcare arrangement which, while not always perfect, is key to the ability to travel on dialysis.
For people who have kidney failure who need dialysis, the EHIC system is essential to allow them to travel in Europe and we are therefore eager to gain a clear picture of what is being done to secure this system after Brexit takes place and the UK leaves the EU.
Read the blog post from dialysis patient Nicola Hawkins, who writes about the life-changing access to healthcare granted by the EHIC.
Many thanks to Amanda Kirwan, who appeared on BBC Newsnight on 9 January to talk about what a no deal Brexit would mean to her. View an extract from the interview.
We need your help
To do this, we need your help to ensure that MPs are aware of the matter and recognise that it concerns a significant group of people. The more people who are prepared to write to their MP to raise this point, the more likely they are to raise it in turn; which will help keep EHIC on the agenda.
Write to your MP
Please write a letter to your MP to ask them to make sure EHIC is an integral part of negotiations. And please ask your family and friends to do the same. You can find your MP by clicking here and typing in your postcode.
Although the United Kingdom has given notice of its intention to leave the EU, we continue to be a member until Brexit actually takes place.
We would really like to encourage you to explain in your own words what it would mean to you if the EHIC system were lost and you were unable to receive dialysis free of charge when you travelled to Europe. Your personal views will allow MPs to understand why this is so important.
Please either send your note as an email or post your letter to the MP’s office .
Please send us a copy at [email protected], Policy Director at Kidney Care UK, 3 The Windmills, St Mary’s Close, Turk Street, Alton GU34 1EF. Thank you to everyone that has done this so far.
The Healthcare (International Arrangements) Bill
The government has brought forward a new bill, the Healthcare (International Arrangements) Bill, which sets up the framework for people to continue to receive healthcare in EU countries after Brexit.
Kidney Care UK was invited to give verbal evidence on the Bill where we summarised some of the concerns for future travel for those on dialysis.
Previously, it progressed through parliament and our understanding is that it will help to provide the equivalent of EHIC and therefore dialysis when UK citizens travel in the EU.
The debate included discussion of dialysis being a reason to have this new law (see below).
Medications and Consumables
The government has prepared some updated information for patients on how they will continue to receive medicines and treatment if the UK leaves the EU without a deal on 29 March 2019. It states that there has been a comprehensive assessment of medicines supply to identify products that are manufactured the EU or wider European Economic Area (EEA) countries. It says that the Department of Health and Social Care has received very good engagement from industry on developing a six-week stockpile of prescription only medicines and pharmacy medicines to ensure supply for patients is maintained across the NHS. and has also secured contract agreements for additional warehouse space for stockpiled medicines, including ambient, refrigerated and controlled drug storage
You can read more on the government website (updated Jan 18 2019)
Meeting at the Department of Health and Social Care
Presently there are 29,000 people in the UK receiving dialysis treatment for kidney failure, and they have the right to travel freely. It is incredibly important that this continues, and so we are working to make policymakers, on behalf of kidney patients, and the media aware of the issue.
On the 14 September we attended a meeting with the Brexit reciprocal healthcare team at the Department of Health and Social Care.
A big thank you to Amanda and Stephen Kirwan and Maddy Warren who travelled to London with Policy Director Fiona Loud to explain to the DH how important it is to retain access to EHIC and travel in the EU after Brexit, and the practicalities of travel on dialysis. This fact-finding workshop will be followed up by another this year and Kidney Care UK were pleased that our concerns have at least been heard, although there is a very long way to go. The campaign for any future settlement to support the needs of kidney patients continues.
In August we wrote to the Secretary of State for Health, Matt Hancock, about our key Brexit concerns, and received a reply in September.
- Kidney Care UK letter to Matt Hancock - Brexit - 5 Aug 2018
- Matt Hancock reply to Kidney Care UK - Brexit - Sept 2018
We have given evidence about EHIC in two Parliamentary sessions, one of which was to the Health Select Committee. We were disappointed that the government response to it has been non-committal, and merely says that there will be some money set aside for staff to work on issues 'such as reciprocal healthcare’. We were encouraged by the stated wish to include reciprocal healthcare in a recent proposal developed at Chequers but nothing is clear yet.
We have met with and briefed a number of Members of the European Parliament (MEPs), who subsequently wrote a cross-party open letter to Jeremy Hunt to ask him to remember dialysis patients in the Brexit negotiations. This letter was picked up by the ‘I’ paper, the Independent and LBC radio. We have briefed the Conservative, Labour, LibDems and SNP MPs and written on several occasions to the Brexit Department and the Ministers for Brexit and Health.
However, as this, along with so many other Brexit issues, cannot be guaranteed, until or unless this is settled we will keep raising this issue on behalf of kidney patients, because the needs of people with long-term conditions will continue to cross borders. In the case of a hard Brexit we cannot know what the outcome will be.
We have received a letter from Sabine Weyand, the Deputy Chief Negotiator at the EU, who has told us that UK nationals would be treated as third country nationals after Brexit. However, she also said "Depending on the level of ambition of the UK, rights under the EHIC system may figure amongst the issues to discuss under the framework of the future EU-UK relations".