Enhancing support and care for people with kidney disease

CEO of the Irish Kidney Association Ms Carol Moore speaks to Catherine Reilly about her first year at the helm and the pivotal issues affecting people with kidney disease

Only 74 kidney transplants took place this year to the end of August. A life-changing event for the individuals who received organs, it is nevertheless a trajectory that presents a cause for concern.

The potential for total kidney transplants to fall lower than last year (when 123 took place) is “very worrying”, CEO of the Irish Kidney Association (IKA) Ms Carol Moore told the Medical Independent (MI). At the time of this interview, the IKA was awaiting further information on the factors impacting this year’s transplant activity to date.

During 2020 the national kidney transplant programme at Beaumont Hospital, Dublin, was paused for approximately 10 weeks due to clinical and capacity factors associated with the Covid-19 pandemic.

IKA

Transplant provision is among a number of key issues for Ms Moore, who was appointed IKA CEO in October 2020. Ms Moore is a member of Chartered Accountants Ireland and has a strong background and interest in healthcare. She is a co-founder of LIFEWISE, an online alcohol harm reduction service, and was Governance Manager with Mental Health Ireland. Ms Moore is also a co-founder of Dual Diagnosis Ireland.

The core function of the IKA, which is a registered charity, is supporting patients and their families affected by end-stage kidney disease (ESKD). In the coming years, it also intends becoming more active in promoting prevention of kidney disease.

The Association has 25 local branches and provides a wide range of information and resources on kidney disease, advocates for greater supports and service improvements, facilitates access to free counselling, provides free holiday accommodation in Ireland for dialysis and transplant patients, and operates a sports programme, among other activities. It plays a major role in organ donation awareness and runs a national annual awareness week.

In the past 18 months, its activities have been profoundly impacted and influenced by the Covid-19 pandemic. Covid-19 has posed a huge threat to people with chronic kidney disease, particularly those on dialysis and transplant recipients, due to a higher risk of serious illness and death.

Throughout the pandemic, the IKA has been active in advocating for kidney patients, including lobbying for vaccine reprioritisation of transplant and dialysis patients in the sequencing plan.

The HSE National Renal Office (NRO) and HSE Organ Donation and Transplant Ireland (ODTI) also supported a reprioritisation.

Ms Moore noted: “It wasn’t that we were trying to jump the queue, it was just that the clinical evidence was very clear that kidney patients and anyone who is immune suppressed are at such huge risk of this and we have seen a huge level of death in our community.”

Chronic kidney disease patients (on dialysis, or eGFR<30ml/min) and transplant recipients are among the cohorts who should receive a third (mRNA) dose of the Covid-19 vaccine, according to the national immunisation advisory committee. This recommendation has been made in the context of people with immunocompromise associated with a suboptimal response to vaccines and is due to be implemented in the coming weeks.

The successful reprioritisation campaign reinforced Ms Moore’s views on the importance of collaboration for the IKA. Ms Moore said she had been “surprised” there were only 10 full-time equivalent staff in the organisation given its high profile.

“So we have to collaborate. We are talking about a memorandum of understanding with the Irish Nephrology Society, we are working with Age Action Ireland, we have joined HRCI [Health Research Charities Ireland] and we work closely with IPPOSI [Irish Platform for Patient Organisations, Science and Industry] in terms of the vaccination campaign. So we will be doing a lot more of that.”

Support

The pandemic has placed a considerable burden on the mental health of kidney patients. According to Ms Moore: “We have seen situations where patients are refusing to go to dialysis because they are scared or because they are so tired of the whole burden of care and we have even seen patients develop agoraphobia.” She said kidney patients should have direct access to mental healthcare through their renal centre.

The development of a peer support programme is among 18 core objectives in a new five-year strategy the IKA has developed in consultation with members and stakeholders. The Association already facilitates “a lot of informal peer support” and intends to formally train patients to become peer support workers, with a view to them eventually becoming employees in renal units. The Association hopes to attain funding from the National Lottery to establish a pilot initiative.

Ms Moore said that wider social determinants have a major impact on health. “Kidney patients don’t automatically get a medical card,” she noted. “With housing costs so high, money has become a real issue for many of our patients.”

People’s living arrangements and accommodation can impede access to home dialysis, which the IKA wants to become much more accessible. According to 2020 NRO statistics, there were 2,014 patients attending in-centre/contract haemodialysis, with just 58 patients accessing home haemodialysis and 238 peritoneal dialysis.

While some financial support is available for patients on home dialysis, the Association is seeking a much more comprehensive approach. It also advocates more ongoing care support for home dialysis patients.

Systemic problems in the health system are limiting the development of home dialysis provision. According to Ms Moore, in-centre dialysis is funded out of the hospital budget as a Hospital Inpatient Enquiry (HIPE) activity. However, once patients move to home dialysis, the hospital budget is reduced (even though the hospital continues to provide care) and this acts as a disincentive for hospitals to encourage home dialysis.

“This is why Sláintecare is so important as it calls for regional structures thus removing the budget barriers between hospital and community-based care,” said Ms Moore. Another difficulty facing patients is accessing ‘out of area’ dialysis for holidays in Ireland, due to lack of capacity.

Transplant

At the end of 2020, some 519 people were on the kidney transplant waiting list, compared to 509 in 2019 and 462 in 2018. Even pre-pandemic, Ireland was significantly short of performing a long-held target of 250 kidney transplants per annum. In 2019 the five-year average was 167.

Ms Moore said she believed “what gets measured, gets managed, gets done”. However, comprehensive information was lacking on the various stages of the donation process (eg, whether donation was requested, medical suitability of potential donors, consent rates, etc).

While the Association has previously posited a second transplanting hospital, Ms Moore considered that this should not be an initial priority. There is a need to maintain a certain amount of operations at a centre to ensure surgeons’ skillset, noted Ms Moore, who also referred to the level of transplantation during 2021.

“What we need to do is ringfence transplant activity,” she said. “It is happening in an acute hospital, so is it a problem that we don’t have ICU beds? Is it a problem that we don’t have theatre capacity? Is it clear to everybody that beds are ringfenced?” Medical recruitment issues must also be addressed, she added.

The Irish health service has been slow to develop real-time information systems, observed Ms Moore. She said there was no core funding for a system of surveillance and measurement to track activity and clinical outcomes in dialysis centres, for example.

“You can get best in class treatment in one centre, and then in another, you don’t get it. And we are not measuring that on a routine, systematic basis. That is why our costs are so high because we are not identifying poor practice and actually dealing with it on a routine systematic basis…. There is a real lack of information. What is needed is a team in the NRO and ODTI that are dedicated to data analytics….”

She underlined that “investing more into organ donor awareness and systems that are tracking and measuring performance will save money”.

Legislation

The long-awaited Human Tissue Bill is due to be published this year.

Under the Bill, it is planned to introduce an ‘opt-out register’ whereby people who do not wish to be considered as potential organ donors can record their wishes. People who do not sign the register would be deemed potential donors, but the consent of families would still be required. The IKA considers that an ‘opt-in’ option should also be included to ensure the public’s engagement with organ donation can continue to be active, rather than passive.

Having a legal framework for organ donation is “important”, said Ms Moore. However, she said the legislation needs to be supported by better infrastructure and a greater number of specialist healthcare professionals facilitating donation to significantly enhance transplant access.

Ms Moore also told MI she was concerned about the “current environment” of Covid-deniers and anti-vaxxers and the potential for such elements to manipulate public opinion around an opt-out register.

“In England, when they did the ‘Share your Wishes’ campaign when they were introducing their opt-out register on top of their opt-in register, a number of the right-wing groups got hold of it and were giving out messages like ‘the government is going to steal your organs’, so we need to be very careful about that.” The IKA has raised the matter at a public awareness group established by ODTI.

The Association also wants behavioural scientists to be engaged to examine the draft legislation, according to Ms Moore.

Finances

The pandemic has impacted the fundraising activities of the IKA. Last year it spent over €400,000 on organ donor awareness activities, which have a large population reach. ODTI contributes €180,000 per annum towards the Association’s awareness activities, although there is no annual funding agreement. This funding is never guaranteed and is paid in arrears, which is an “unsatisfactory” situation, said Ms Moore.

There are increasing financial demands on charities for more services and in regard to ensuring good governance, she noted. While the IKA is fortunate to have legacy funding, the current situation of an annual deficit cannot continue forever, said Ms Moore.

The organisation will be working on developing its fundraising strategy, stated the CEO, who remarked upon the “impressive” loyalty and commitment that people have shown towards the organisation.