All patients who can benefit from CF drug should get access – NCPE Director Archive.php

The Director of the National Centre for Pharmacoeconomics, Prof Michael Barry, has told this newspaper that all patients who would benefit from the cystic fibrosis (CF) drug, Kaftrio, should have access to the medication.

Currently, 140 children in Ireland have access to the drugs ivacaftor/tezacaftor/elexacaftor (branded as Kaftrio) under an agreement with the pharmaceutical company, Vertex.

However, 35 children, aged between six and 11, with a particular genotype, do not have access to the medication.

Speaking to the Medical Independent (MI) at a recent Health Research Board conference on precision medicine, Prof Barry said: “My position is that there was an understanding that the drug would be made available for all patients who would benefit from it. And that just doesn’t seem to have happened in the case of 35… children and I think they should get access to it.

He continued: “The HSE’s understanding was that people who were eligible for [Kaftrio] would get access to it under the portfolio deal. I think that should still remain the case.”

Prof Barry acknowledged the ongoing negotiations taking place in the dispute with Vertex. “I’m not sure what the outcome will be,” said Prof Barry. “But there was an agreement, and I think it should stand that everybody who is eligible should get access to it.”

In response to his comments, a spokesperson for Vertex told MI the patient population of the 35
children were not included in the original agreement as “it was not known at that time that our
medicines would work in these patients”.

The spokesperson added: “Vertex is committed to seeking a rapid resolution, together with the HSE
and these discussions remain the highest priority for Vertex. These talks with the HSE remain
constructive and active to secure a path forward.”

In October, Cystic Fibrosis Ireland (CFI) held a meeting with the Minister for Health Stephen Donnelly regarding the Kaftrio dispute.

In a press statement after the meeting, the organisation said: “[We] urged the Minister to consider the possibility of allowing immediate access to Kaftrio for the 35 children, without prejudice to a final agreement on pricing. We further urged the possibility of seeking international arbitration to resolve the present impasse.”

CFI added that the dispute had “the potential… to damage excellent relationships and partnerships built up over many years”.

First National Traveller Health Action Plan launched Archive.php

The National Traveller Health Action Plan (NTHAP) 2022-2027 launched today (28 November) aims to improve the health experiences and health outcomes for Travellers.

The Department of Health is providing additional ring-fenced funding of €1 million in 2023 to support the implementation of the plan, with a further €300,000 specifically for mental health services.

The NTHAP acknowledges the health inequalities that Travellers experience, arising from the social determinants of health and the obstacles they can face in accessing healthcare services. It will provide a solid foundation upon which to build and maintain a legacy of success in addressing the additional health needs of the Traveller population, according to the HSE.

Minister for Health, Stephen Donnelly said at the launch: “Today is about accepting the reality, acknowledging that in the past enough has not been done, [and] putting in place a plan for the future to make sure that the services that are needed for Traveller men, women and children are provided.”

He also said in a press statement: “[The NTHAP] is a comprehensive public health response to the health needs of Travellers, that that sets out tailored and affirmative measures to prevent disease, promote health and prolong life, and are delivered in partnership with Traveller. In particular, I welcome the focus on the mental health needs of Travellers, which is in line with the prioritisation of Travellers in my Department’s mental health policies.”

“To address the needs of Traveller women who experience homelessness additional funding is being provided from the Women’s Health Action Plan,” he added.

The plan includes health and social care interventions that will have the most impact on Traveller health, including mental healthcare and chronic disease diagnosis, early interventions and management.

The NTHAP contains 45 actions, which include:

  • Continue to resource Primary Health Care for Traveller Projects (PHCTPs) in line with key responsibilities for marginalised communities
  • Identify resources to reinstate and expand PHCTPs in areas where they do not exist.
  • Consolidate the public health measures put in place to minimise the impact of Covid-19 and other communicable diseases on Travellers, including primary childhood immunisation programmes, control of outbreaks such as hepatitis A, and Covid-19 vaccinations.
  • Support and resource peer-led initiatives focused on Traveller men’s health to improve mental health and wellbeing.

Ms Mary Brigid Collins, Primary Health Care for Travellers representative on the National Traveller Health Action Plan Steering Group, said: “I am delighted at the publication of this much-needed National Traveller Health Action Plan. I believe it has the potential to bring about real positive change for Travellers around the country.

“It has Traveller inclusion at the centre of the plan and recognises the impact of racism, discrimination, poor living conditions, poor outcomes in education and unemployment have on health outcomes.

“It recognises also the importance of active Traveller participation and the role of Traveller Health Units and Traveller Primary Health Care Projects. Travellers look forward to continuing to work with the [HSE] and the Department of Health and will continue to highlight the need for recurring and realistic budgets if we’re serious about implementing the plan.”

The Minister for Children, Equality, Disability, Integration and Youth, Roderic O’Gorman said: “We know that Travellers have poorer health outcomes than that of the general population, and face particular challenges in accessing health care services.

“The development and implementation of a detailed action plan to address the specific health needs of Travellers is an action of the National Traveller and Roma Inclusion Strategy [NTRIS], which is led by my Department, and is a key commitment of the Programme for Government.”

The HSE plans to establish a steering group before the end of 2022 to monitor and report on the implementation of the plan at national and regional levels. Traveller Health Units will also develop a 5-year implementation plan and publish an annual report.

Consultant talks reach final stages Archive.php

The Medical Independent (MI) understands that the contract negotiations between the Department of Health, the HSE and the representative bodies are in the “final stages”.

Officials with the Department of Health and the HSE have been involved in negotiations with the consultants’ representative bodies, the IHCA and the IMO, since June under the new Chair appointed at that time, Mr Tom Mallon.

Sources close to the talks told MI that the process was in the “final stages”, and that they “think a deal is close”.

In an interview with the Sunday Business Post on 13 November, Minister for Health Stephen Donnelly described the negotiations as “very close” to being finished.

Minister Donnelly said he believed talks will result in a “very attractive contract”. On 14 November, The Irish Times reported that the Cabinet committee on health was set “to discuss an improved salary offer” for consultants that could pave the way for a deal.

However, neither the IHCA nor the IMO would comment on the salary speculation or progress in the talks when contacted by this paper.

“Given the agreement between all parties on confidentiality, it would not be appropriate to say anything further in relation to the details of the negotiations,” a Department of Health spokesperson told MI.

“The Government is committed to introducing the new contract as soon as possible.”

An agreed new consultant contract is “critical” to attracting doctors back to Ireland, the Medical Director of HSE National Doctors Training and Planning (NDTP), Prof Brian Kinirons, told this newspaper.

Speaking to MI at the recent conference in Dublin marking the launch of the NDTP Strategic Plan 2022-27, Prof Kinirons said a new contract “does matter” in the context of recruitment.

“I think it is about creating an environment where people want to work in,” he said. “So the contract is critical. We want to create a contract that is actually attractive, that will actually bring people back to Ireland. We don’t want to create barriers to that.”

NWC welcomes substantial progress in cervical screening programme  Archive.php

The National Women’s Council (NWC) welcomed Dr Gabriel Scally’s final report investigating the implementation of his recommendations after the CervicalCheck scandal.

The council commended the substantial progress and urge follow-up action on the gaps Dr Scally identified.

NWC Director, Ms Orla O’Connor said: “The country owes a debt of gratitude to Dr Gabriel Scally for his initial report on the CervicalCheck scandal, which identified a culture of misogyny and paternalism that dismissed women’s voices and experiences. It paved the way for the Women’s Health Action Plan, a milestone in women’s health, and which has significant potential to address systemic deficits.

“To truly create a culture of care which listens to women and recognises them as experts by experience, we need to revisit the training and supports given to professionals working in healthcare. As the Action Plan acknowledges education and training are the key levers for change. ”

The NCW said they echo Dr Scally’s statement that the best way to honour the late Ms Vicky Phelan is by implementing his recommendations in full, particularly on mandatory open disclosure for patients.

In the review, the recommendation that “a statutory duty of candour must be placed on both individual healthcare professionals and on the organisations for which they work” was marked red as “there has been no progress on this”. Speaking to the press, Dr Scally called the issue of open disclosure is “unfinished business”.

He said: “Of course there will be instances where open disclosure is not appropriate…. But we should start on the basis that we expect all of our health professionals in this country to be open and honest when an error has happened.”

The NWC also said in a press statement: “We urge the professional medical bodies to affect a culture change around duty of candour. We also urge An Taoiseach to progress the Patient Safety Bill.”

NWC’s Women’s Health Coordinator, Ms Alana Ryan said: “Women shouldn’t have to go to court to achieve the truth, an apology or guarantees that what happened to them won’t happen again. The Patient Safety Bill will be a welcome first step towards mandatory open disclosure, but it must be matched by reform from the professional regulatory bodies. There must also be a culture shift towards supporting patient feedback and resolving complaints swiftly.”

Dr Scally also underlined that there is now much less fragmentation in laboratory testing, with the use of a single quality-assured American laboratory now analysing all samples.

Ms Ryan continued: “Substantial progress has been made since Dr Scally’s report. The next step must be to resource and appropriately staff the National Cervical Screening Laboratory in the Coombe so that it can provide these services in Ireland.”

The NWC encourages women to keep attending for screening and to have renewed confidence in the cervical screening service as “cervical screening saves lives”.  

Irish Family Planning Association releases new data on early abortion service Archive.php

New data published in the Irish Family Planning Association’s (IFPA) Activity Report for 2020 and 2021 shows that its early abortion service is working well.

Speaking on the launch of the report, IFPA CEO Mr Niall Behan, said: “We see the positive impact of the legalisation of abortion every day in our clinics. Most women in Ireland now have timely access to local abortion care, without having to explain or justify their decision to anyone. This has been transformative for reproductive health.

“758 clients accessed abortion care through the IFPA in 2020 and 2021. 89 per cent of women who attended our service were less than nine weeks pregnant at the time of their abortion. This suggests that women know where and how to access care, which is very positive news.”

The vast majority of IFPA clients (92 per cent) self-managed their early medical abortion at home, according to the data. In line with HSE guidance, 8 per cent of IFPA clients whose pregnancies were between 10 and 12 weeks or who had other additional medical needs were referred to hospitals for their abortion care.

However, as the Department of Health abortion review nears completion, the IFPA warns that the 12-week limit and mandatory three-day waiting period are harming women and the law must be reformed.

According to Mr Behan: “Due to the rigid 12-week limit for abortion care, hospital referrals for pregnancies over 10 weeks can be intensely pressurised and very stressful for women, IFPA doctors and hospital staff.  Our experience reflects World Health Organisation (WHO) guidance, which is clear that gestational limits cause harm and should be removed.

“We also know from our specialist pregnancy counselling service that women are excluded from abortion care because of the 12-week limit. Our counsellors support women who are denied care in Ireland and forced to travel abroad for abortion services. These women experience significant stress, distress and stigma, as well as enduring the financial and logistical burdens of accessing healthcare in a different country. Forcing people to travel for abortion care is cruel and inhumane. It must stop.

“We also know from our services that the mandatory three-day waiting period causes distress and delay to our clients. It has no health rationale and interferes with women’s ability to make autonomous decisions about their healthcare. It is paternalistic and demeaning for women seeking care and it must be removed.”

Mr Behan concluded: “There is unfinished business for members of the Oireachtas with respect to abortion law. We know as a healthcare provider that legal restrictions – such as the 12-week limit and three-day wait – exclude, delay and cause harm to those seeking care.

“These barriers must be removed. Robust recommendations from the imminent abortion review will provide politicians with a critical opportunity to address legislative failings, reform the 2018 Act, and ensure access to abortion care for all who need it.”

Lessons from WIMIN Archive.php

The optimism and positivity at the recent women in medicine conference was energising.

The Women in Medicine in Ireland Network (WIMIN) fourth annual conference was held in Limerick this October. WIMIN was founded in 2018 by Dr Sarah Fitzgibbon. Its aim is to support, encourage, and advocate for women in medicine in Ireland. Sarah is one of many women who are awake to the fact that despite four waves of feminism, gender inequality still exists in many professions, including medicine. Among other things, gender and pension pay gaps still exist and more women than men are employed in lower-paid jobs. But I am not going to dwell on these issues. Instead, I want to convey the sense of optimism and positivity that prevailed among conference delegates; the sense of solidarity that comes from many women acknowledging the constant tension between professional and personal lives, and to encourage anyone who feels alone in their struggle to join WIMIN, or at least put next year’s conference in your diary. 

Sarah is well qualified to support and advocate for women doctors. As well as being the founder of WIMIN, she is a GP, wife, mother, feminist, writer (well known to anyone who reads this paper), public speaker, event organiser, Primary Care Clinical Advisor with CervicalCheck, and, for me, a role model on how to live a full life despite significant challenges. (Sarah also lives with Stage 4 cancer). This conference did not just talk about supporting women; it showed how to it by including childcare facilities, and making sure that delegates could attend both in-person or online. Attendees also sponsored medical students who contributed valuable insights throughout the day. 

Through a mix of interview-style presentations and lectures, we heard stories from women who carved their own career paths despite gender barriers and others who are still experiencing bullying, racism, and sexual harassment at work. Dr Lisa McNamee is an example of the former. By her own admission, Lisa was no stranger to hard work when she completed Graduate Entry Medical School. But working as a doctor was different and she was not prepared for how drained she felt at the end of every day, how she missed the team spirit of her film-making days and the high levels of burnout evident all around her. Lisa went on to train in military medicine and to become co-founder of Space Medicine Ireland, an organisation for medics with an interest in aerospace medicine. 

Dr Syeda Amna Azim spoke honestly and bravely about her experiences of discrimination as an international woman doctor in Ireland. Syeda is the first Pakistani woman to obtain a dual qualification for oral and maxillofacial surgery. As a previous NCHD lead for surgery and a member of IMO subgroups for women and interns, Syeda is used to speaking about injustices in the workplace, both on behalf of herself and others. She had asked herself many times if the reason she experienced discrimination was because she was a woman, a woman of colour, a woman with a headscarf, or because she raised her voice. The woman next to me nudged me and whispered, “it’s because she raised her voice.” Her justified anger made many of the audience uncomfortable. I wondered if this was because we are not used to women raising their voices and expressing anger in public places. Perhaps we are scared of being branded as that archetypal feminist wielding an axe and so we stay silent. 

In Cinderella, (the Grimm and not the Disney version of the fairy tale) one of Cinderella’s sisters cut off her toe so that her foot would fit in the glass slipper. The second sister cut off her heel. Sometimes medicine feels like a glass slipper. Work practices devised by men in a time when there were very few women doctors are slow to change and women must cut off part of themselves to fit into the doctor mold. Increasing numbers of women in medicine are described as the “feminisation of medicine”, as if women were a rapidly spreading rash that will destroy everything. As if, maternity leave, breastfeeding breaks, time off for childcare, or the wish to blend work with personal life are inconveniences that disrupt the flow of the real world, making women feel that they must choose careers that are not so important that they cannot be interrupted. 

Women are still facing significant challenges in the workplace. The first step towards changing this is awareness. Second is to acknowledge our anger and express it honestly and respectfully as Syeda did. Thirdly we must work with men and not against them to change things. If we keep these thoughts, grievances, and insights to ourselves nothing will change. There are enough men who would be willing to help, but who may need to be awakened to the problems and invited to join us for the benefit of all. 

Neurologists call for resourcing to keep pace with advancements Archive.php

Neurologists have called for the allocation of greater resources to keep pace with the advancements in their specialty. 

They were speaking at the Irish Neurological Association’s Annual Neurology Update Meeting on 7 October in Dublin. 

Consultant Neurologist at Cork University Hospital Dr Brian Sweeney spoke to the Medical Independent (MI) about how diagnoses have changed as disease specification has narrowed, allowing for more precise treatment. 

The main challenge was ensuring the appropriate resourcing and staffing to implement therapies and technologies, he indicated. 

Referencing the benefits of deep brain stimulation, for example, he noted that the procedure required a multidisciplinary team involving neurosurgery, neuropsychology, physiotherapy, and radiography. “What we can do is awesome, but it requires time and accuracy,” he said. 

Consultant Neurologist at Beaumont Hospital in Dublin, Prof Norman Delanty, told MI: “Things are getting more complex… we need more resources. We need more neurologists and we need the national genetic strategy to be [developed and] implemented.” 

Consultant Neurologist at Beaumont Hospital Dr Eavan McGovern said the presentations at the meeting showed the advancements in precision-based therapies and technologies. “It is becoming more complex within each subspecialty,” she told MI. “[But] in spite of all that development, at the root of it is clinical semiology. We still have to develop and be good at the basics to open the gate to all those technologies.” 

ICGP launch discussion paper to address GP capacity and workload crisis Archive.php

The ICGP has proposed ten potential solutions to the growing shortage of GPs in a new discussion paper launched at its Autumn Conference.

Against a growing workforce and workload crisis, most GP practices in both urban and rural Ireland are unable to take on new patients, according to the College.

A 2021 membership survey showed that almost 74 per cent of GPs said they were unable to take on any new private patients, while 79 per cent could not take on any new GMS patients.

ICGP research also indicates that the extension of free GP care to over 400,000 patients could lead to another 640,000 GP consultations.

The Chairman of the ICGP Board, Dr John Farrell, said: “Your GP is your first point of contact for your personal health, who co-ordinates your care, knows your history, and refers you to specialists, for a wide range of diseases over a period of your lifetime. GPs and their practice teams deliver 29 million consultations every year, and that doesn’t include out-of-hours services.”

He added: “GP practices are busier than ever, but less able to find replacements for retiring GPs, or new GPs to expand their practices and deal with growing workloads. The ICGP is now training 70 per cent more GPs per year than it did six years ago, but we have an ageing workforce and an expanding population.

“25 per cent of our GPs are over 60 years of age. More and more patients are unable to register with a GP practice, because many practice lists are at full capacity, and already there are significant waiting times for routine appointments.”

Prof Tom O’Dowd, former ICGP President and GP in Tallaght, chaired the ICGP group which produced the discussion paper, entitled Shaping the Future of General Practice .

Prof O’Dowd said: “We propose solutions in this paper, but it is the key stakeholders working collectively that will help produce the solutions. This is an urgent problem that cannot be solved overnight, and while we welcome the Minister’s decision to establish a strategic review of general practice, we urge the Minister to act immediately and to begin the process of finding innovative solutions to this crisis. This review and establishment of a Working Group is needed as a matter of urgency if the extension of free GP care is to proceed.”

The ICGP’s potential solutions are:

  • Expanding GP-led multidisciplinary teams.
  • At least doubling the number of GP practice nurses.
  • Resourcing the career expectations of future GPs.
  • Providing suitable premises for GP-led multidisciplinary teams.
  • Fast-tracking suitably-qualified GPs to take on GMS lists.
  • Increasing remote consulting.
  • Introducing a career pipeline for rural general practice.
  • Developing the role of practice manager.
  • Increasing exposure to general practice in medical schools.
  • Investing in GP data-informatics to drive policy and practice.

Speaking to the Medical Independent, Prof O’Dowd said that the State will need to provide funding to expand GP practices and facilities, especially to facilitate multidisciplinary teams.

He said: “If you’re getting a building you have to future-proof it and that includes having a few floors free because you will fill them in two or three years.”

Prof O’Dowd added the College was “very keen” on the medical schools expanding GP places. “I think the medical schools… have given general practice a corner of the curriculum and it’s not enough.”

The CEO of the ICGP, Mr Fintan Foy, said: “This discussion paper, driven by our members’ concerns, provides workable solutions and the ICGP is ready to play its part as a key stakeholder as part of a strategic review. For the sake of our patients and to retain high quality clinical care within the community, the need for Government and those in authority to respond is now critical.”

The ICGP held its Autumn Conference on Saturday 15 October , in the Royal Marine Hotel in Dún Laoghaire, Co. Dublin. The discussion paper Shaping the Future of General Practice is available here.

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The Medical Independent 28th November 2022

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