Jenni Minto
Scottish National Party · Scotland
“I would like to reflect on Willie Rennie’s comments. Bute welcomed families from Syria, who are now an integral part of the island. In Lochgilphead, Ukrainian families have settled and helped to revitalise the town’s main street with two new businesses.”
“Mòran taing, Oifigear Riaghlaidh. Thank you very much, Presiding Officer. I want to start with the words of one of my constituents: “I am not a politician, nor do I ever wish to become one. I am a leatherworker, a father and a business owner.”
“Ben Macpherson: There are many initiatives and policies in this space to encourage and support our young people to ensure that they can fulfil their potential, including the free tuition that the Government has provided for students.”
“Yesterday, I met pupils at Sunnyside primary school in Glasgow, and we talked about climate change, the Celtic and Amazonian rainforests and the fact that Scotland is the proud host of a rainforest. In my constituency, Dunoon grammar school won the world’s best school prize for community collaboration.”
“If any of the Reform members had taken part in my colleague Maggie Chapman’s debate on university education, they would have heard me talk about the Scottish Association for Marine Science, which is in Oban, in my constituency.”
“He spoke about the impact that Brexit had had on his business and how, because of that vote, his order book collapsed. He had to find new ways of marketing and promoting his business to ensure that he and his family survived. He spoke about the support that he had received from the SNP to expand his business.”
The complete record
Every one of 586 lines we hold for Jenni Minto, in date order, each linked to its source. Free to read, in full, without an account. Page 10 of 12.
“How on earth has that been allowed to happen under a Government that promised openness and accountability after previous scandals in maternity care? When exactly was the minister made aware of the widespread failure by NHS boards to publish those reports, and what did she do about that? Jenni Minto: Any death of a mother or baby is a tragedy, and I extend my heartfelt sympathies and condolences to all who have experienced that trauma. We have to recognise that the vast majority of public engagement with our national health service is positive, but we are certainly not complacent. I read the piece in the Sunday Post on Sunday.”
“That programme includes on-going engagement with Healthcare Improvement Scotland on the renewed approach to reviews, and my officials will meet Healthcare Improvement Scotland on 15 May to discuss that important work. Stephen Kerr: I pay tribute to the Sunday Post journalist Marion Scott, whose outstanding public interest journalism has, once again, exposed failings that have had devastating consequences for families in Scotland. We know that, despite the Scottish Information Commissioner saying that they can be published, more than 500 redacted significant adverse event reviews of the avoidable deaths of mothers and babies have not been published—not one. Those tragedies should have been investigated and learned from; instead, they have been hidden.”
“In February this year, Healthcare Improvement Scotland published its updated national framework for reviewing and learning from adverse events in NHS Scotland. National health service boards must operate within that robust national framework, which includes a template for sharing learning from adverse events locally and nationally. The Scottish perinatal network has facilitated tailored, cross-board learning opportunities following adverse events to share learning across the maternity and neonatal community. The Scottish Government is currently meeting directly with leaders from all NHS boards as part of a programme of work to improve significant adverse event reviews.”
“14:30 On resuming— Portfolio Question Time Net Zero and Energy, and Transport”
“We are committed to creating a tobacco-free Scotland by 2034, and we welcome the reintroduction of the UK-wide Tobacco and Vapes Bill, which will help us to achieve our ambitious target as smoking rates continue to decline. That suite of prevention measures will help people to better manage their condition and support us in our work to prevent respiratory disease in future generations. I close by reiterating our commitment to ensuring that everyone who is living with asthma in Scotland receives the best possible treatment, care and support. We know that there is still more to do in respiratory care, and we can improve by better understanding the needs of people who are living with asthma, as I was so eloquently reminded at the round-table event last night. The Deputy Presiding Officer: That concludes the debate. 13:27 Meeting suspended.”
“We understand that, for those who are living with asthma and other conditions, environmental factors play a huge role in their daily lives, as Clare Adamson laid out so well when she referenced the sad death of Ella in London. Our vision is for Scotland to have the cleanest air in Europe, and we are committed to protecting people from the effects and harms of poor air quality. For example, the introduction of low- emission zones in our four largest cities from 2022 was a key initiative to further improve urban air quality. I note a number of members’ points about air pollution monitors in other locations, and I will speak to Government colleagues with regard to that. As Gillian Mackay noted, Scotland also has in place a range of world-leading tobacco control measures.”
“We will now work with key stakeholders across health and social care to ensure that those guidelines become a reality for clinical professions and those who live with asthma. A key part of that will be continuing to promote the quality prescribing guide for improvement in respiratory conditions, which was published last year. The guide aims to keep people at the centre of their treatment and promotes safe and sustainable evidence-based prescribing. It highlights the importance of people with asthma having access to personalised asthma action plans. As Emma Harper mentioned, the guide also highlights that each person should receive training on how to use their inhalers properly.”
“That guidance was a collaboration between the British Thoracic Society, NICE and SIGN, and signals a shift in asthma care. It aims to improve the accuracy of diagnosis and to help people to control their asthma and reduce their risk of asthma attacks. We know that diagnosis of asthma is a key area for improvement, and the guideline recommends a change in investigations to simplify the diagnostic pathway. As Alexander Stewart mentioned, changes include using FeNO breath tests and blood investigations alongside traditional tests, such as spirometry and peak-flow measurements. We hope that that directs us towards standardised, evidence-based care that will improve outcomes for everyone living with asthma.”
“We know that around 360,000 people in Scotland have a diagnosis of asthma and that it is the most common respiratory condition impacting people of all ages. Most people living with asthma are supported well by their GP and practice nurse. However, we recognise that there is a way to go to ensure that everyone gets the care that they need at all stages of their life. That, too, was highlighted in the discussion at the round-table event last night. We were also reminded by Emily Kennedy, of the Royal Pharmaceutical Society, of the support that community pharmacies can also provide. Over the past year, a major milestone in asthma care has been the publication of a new guideline on asthma diagnosis, monitoring and management, as Emma Harper laid out.”
“I absolutely recognise the importance of having that meaningful data, and we are considering what the best way forward is with that work. World asthma day allows us time to reflect on the progress that has been made in respiratory care, and on the challenges that we face. We know that care and treatment for asthma are not always where they need to be; that is reflected in the concerning statistics on asthma deaths last year, as many members have mentioned. The Scottish Government is committed to improving services across the country in order to meet people’s needs through the implementation of the respiratory care action plan. The theme of this year’s world asthma day, as many members have said, is “Make Inhaled Treatments Accessible for ALL”.”
“However, as I am sure that members from all parties are aware, we are consulting on a long-term conditions framework. The consultation runs until 20 July. As I said at the event last night, I see that framework as being very similar to our cancer framework, in which there are common areas across different cancers that are joined up and specific strands of work for outcomes on specific cancers. I encourage everybody who is living with asthma to respond to the consultation so that the perspectives of people with respiratory conditions are properly reflected in the consultation. Carol Mochan correctly raised a point about the importance of data. In 2023, as she will know, the Scottish Government provided Public Health Scotland with funding to undertake a scoping exercise to develop a respiratory audit programme.”
“They are right—the statistics on asthma deaths are alarming; that was the preamble to my conversation with the chief medical officer yesterday. The Scottish Government is absolutely committed to preventing avoidable harm, and I thank members for continuing to highlight the risks. We know that most people with asthma are treated by their GP or practice nurse, and we have committed a greater proportion of new NHS funding to primary and community care so that GPs and services in the community will have the resources that they need for their essential role in managing conditions such as asthma. Maurice Golden and Carol Mochan both highlighted the Government’s respiratory care action plan. We continue to support a number of projects via NHS partners, and the action plan is still being supported.”
“Last night, I was pleased to join a round-table event on interstitial lung disease, which was hosted by Colin Smyth. One of the attendees at that session reminded me, and everyone in the room, of the importance of listening to those who are living with respiratory conditions when we are shaping policy; members have commented on that in the debate. Although asthma is not directly a cardiovascular disease, it can increase the risk of developing such diseases. Yesterday, I had a conversation with the chief medical officer, who had hosted a webinar for about 1,000 GPs on respiratory disease. A lot of work is constantly going on in the background. I will touch on a couple of points that have been raised by Emma Harper, Maurice Golden and others.”
“I, too, thank Emma Harper for lodging this important motion, and I welcome the opportunity to respond to the debate on behalf of the Scottish Government. I put on record my thanks to those who support people living with asthma in Scotland, including NHS staff and third sector organisations such as Asthma and Lung UK. I also recognise, as a polite agitator of the group, the important work of the cross-party group on lung health, which is chaired by co-conveners Emma Harper and Alexander Stewart. I am always pleased to attend those meetings. The debate has been valuable, and I thank everyone who has contributed for recognising that, across all parties, we share the desire to raise awareness of asthma and ensure that the people who live with it receive the best possible care.”
“It is part of the Scottish Parliament Official Report archive and has been sent for legal deposit. Published in Edinburgh by the Scottish Parliamentary Corporate Body, the Scottish Parliament, Edinburgh, EH99 1SP All documents are available on the Scottish Parliament website at: www.parliament.scot Information on non-endorsed print suppliers is available here: www.parliament.scot/documents For information on the Scottish Parliament contact Public Information on: Telephone: 0131 348 5000 Textphone: 0800 092 7100 Email: sp.info@parliament.scot”
“In closing, I reiterate that I have listened to national clinical experts, to parents of babies in neonatal care and to maternity and neonatal staff across Scotland. I am assured that the move to the new model of neonatal care will deliver the best outcomes for those very smallest and sickest babies. I thank everyone who has taken time to speak with us. Their experience is, and will continue to be, invaluable as we take forward our work, working collaboratively to plan, deliver and transform services that are critical in delivering the best care for pregnant women, newborn babies, partners and families in Scotland. The Deputy Presiding Officer: That concludes the debate. Meeting closed at 18:32. This is the final edition of the Official Report for this meeting.”
“I thank all neonatal units, which are committed to the Bliss baby charter, and I thank Bliss for championing and supporting on-going improvements in care. The changes that the units are making to provide the best care possible for those babies and their families are extremely commendable. Our expectations remain clear that all women, at all times, receive high-quality, person-centred maternity care that is tailored to their needs, with quality and safety for mothers and babies central to decision making. I reassure members that, although the decision has been made, we have created opportunities to listen to parents and families as we develop plans for implementation. The Scottish Government, with the support of Healthcare Improvement Scotland and Bliss, has consulted families via an online survey and focus groups.”
“In the Bliss report on accommodation for parents of neonatal babies in the UK, the charity notes that it is clear that more needs to be done to accommodate families, and we are considering the Bliss recommendations in relation to the Scottish findings. However, I was pleased that the young patient family fund, which is available only in Scotland, was recognised as providing valuable support to families with the costs of travel, food and accommodation. In addition, all 15 of our neonatal units are working towards implementation of the Bliss baby charter, providing neonatal units with actions and goals to develop a culture of partnership with parents. I thank all neonatal units— Tess White: Will the minister take an intervention? Jenni Minto: I have taken two interventions already, so I would just like to continue.”
“The change may mean that a small number of families will have to travel further to be with their baby. The “Best Start” report recommended that “Neonatal facilities should provide sufficient emergency overnight accommodation on the unit for parents ... with alternative overnight accommodation being made available nearby for parents of less critically ill babies.” Considerable developments have been undertaken to ensure that mother and baby stay together and separation is minimised. All three of our neonatal intensive care units have accommodation available, both in the unit and nearby, to ensure that families can stay with their baby.”
“That includes further work on modelling the detailed impact on maternity services, and it will inform additional maternity capacity requirements, including for transfers, theatre, ultrasound and interventions. In order to progress the new model of neonatal care, we must do all that we can to ensure that the infrastructure, workforce and funding is in place to support and sustain the model. We are continuing to provide transitional funding to the boards that are hosting the neonatal intensive care units, as we have done for NHS Greater Glasgow and Clyde and NHS Lothian since 2019, totalling £6.5 million, and with additional support for NHS Grampian now being included. That is in addition to the £25 million of support that we have provided to all boards for implementation of the package of recommendations within best start.”
“[Laughter.] Jenni Minto: My apologies, Deputy Presiding Officer—and I would never refer to you as “you”. I would be very happy to meet Ms Gallacher, and I will come to the point about accommodation later in my speech. Over this year, we will carry on working with regional chief executives and NHS boards to continue to implement the service change. Implementation is already under way in the east region, with Fife babies transferring to Edinburgh, and in the west region, with Ayrshire babies transferred to Glasgow. We have established a task and finish group, made up of the regional chief executives, regional planners and lead clinicians, to oversee and support a suite of national actions and co-ordination that will be required for the delivery of each region’s implementation plan.”
“If the answer is no, we should not be going for the downgrade. Regarding the points that Jackie Baillie raised in relation to three or five units under the best start model, we have, again, to ask the question: why was the award-winning neonatal department at Wishaw general not included in the redesign? Jenni Minto: I thank Meghan Gallacher for her intervention. As I said earlier, my office door is very much open. I would be very happy to have a conversation with you on the matter, because I realise how passionately you feel about it— The Deputy Presiding Officer: Minister, we all need to speak through the chair; that has applied to a number of speakers already. Otherwise, you are referring to me, and I do not think that you necessarily want a conversation with me about the matter.”
“Safety for the babies, families and staff is our utmost priority, which is why we have taken a phased approach to transition, allowing time to build the right levels of capacity in all areas, with NHS boards working towards full implementation by 2026. Meghan Gallacher: I understand what the minister is saying. We are talking about how the implementation is going to be carried out—a lot of boards are involved, and various different people are being appointed to positions to carry it out. However, this is what parents need to know. If the Government continues with the downgrading of neonatal services and parents have to travel up to three hours to get to Aberdeen, if that is where they need to go, will there be a room for them to stay overnight with their babies, so that they can be close by should anything happen?”
“Following the announcement in July 2023, we asked regional chief executives to plan for the national model to be implemented locally, with national monitoring of implementation being co- ordinated by the Scottish Government. We commissioned independent modelling work to fully map the capacity requirements across the system to support planning that was under way, and that report was published in May last year. Since the announcement of the new model, implementation groups have been established in each region, with representation from each health board, relevant clinical groups, partners and service users. Each group now has in place a regional implementation plan that outlines local work, both planned and under way, to deliver the new model of care.”
“Why did you not do that? That was the recommendation of experts. The Deputy Presiding Officer: Always through the chair. Jenni Minto: I thank Jackie Baillie for her intervention; I know that she has had conversations with the cabinet secretary in that regard, and he has made it clear that the evidence that we had on the number of babies who require intensive neonatal treatment said that three was the correct number. In this debate, we are touching on babies who are the sickest and most vulnerable, and who need the most specialist care. Those babies will benefit most from clinicians who know about that care: those who, through the frequency of caring for such babies, have specialised in such care and have an additional layer of familiarity and expertise.”
“It is important to stress that local neonatal units will continue to provide care to babies who need it, including a level of neonatal intensive care. That evidence is widely supported by a range of stakeholders and clinicians—including Bliss, the leading charity for babies who are born premature or sick, which members have mentioned—and now forms the basis of professional guidance that is published by the British Association for Perinatal Medicine, the professional body for neonatology and a specialty group of the Royal College of Paediatrics and Child Health. Jackie Baillie: The “Best Start” report recommendation was actually for “Three to five ... units”. Why did you not include Wishaw neonatal unit? You could easily have done that, because NHS Lanarkshire is the third biggest health board. You could have had four units.”
“It is important to set out why the “Best Start” report recommended this change, and why we are moving forward with it. The report, which was based on expert clinical evidence, found that outcomes for the very smallest and sickest babies are best when they are cared for in neonatal intensive care units with high-volume throughput, and where there are co-located specialist services such as neonatal surgery. To put it simply, the clinical advice is that making this change will improve those tiny babies’ chances of survival. Based on the number of those babies born in Scotland, three neonatal intensive care units would be the optimum model for Scotland. It is important to stress— Jackie Baillie: Will the minister give way? Jenni Minto: I will just come to the end of this section.”
“I thank those members who have taken part in the debate. Like other members, I thank Meghan Gallacher for bringing the debate to the chamber, and I note that my door is always open for her to meet me. Today’s discussion provides me with the opportunity to update Parliament on the progress towards implementing the new model of neonatal care. First, I commend—as other members have— the 15 incredible neonatal units that we have in Scotland, which provide, and will continue to provide, invaluable neonatal care for the babies who require it. In each of the units that I have visited, I have been hugely impressed by the dedication of staff and the support that they provide for families in those most difficult times. The parents’ stories of the care and compassion that they have received from staff in all parts of Scotland are truly inspiring.”
“Published in Edinburgh by the Scottish Parliamentary Corporate Body, the Scottish Parliament, Edinburgh, EH99 1SP All documents are available on the Scottish Parliament website at: www.parliament.scot Information on non-endorsed print suppliers is available here: www.parliament.scot/documents For information on the Scottish Parliament contact Public Information on: Telephone: 0131 348 5000 Textphone: 0800 092 7100 Email: sp.info@parliament.scot”
“It is crucial that we continue to raise awareness of cancer symptoms, and I thank everyone who is helping to do so in order, as Elena Whitham said, to extend people’s lives. The Deputy Presiding Officer: That concludes the debate, and I close this meeting of Parliament. Meeting closed at 17:58. This is the final edition of the Official Report for this meeting. It is part of the Scottish Parliament Official Report archive and has been sent for legal deposit.”
“I know that the campaign has hugely helped to reduce the stigma and embarrassment when talking about testicular cancer. I congratulate him on his “Star Trek” connections, and I also congratulate Cahonas Scotland for the global—and perhaps even intergalactic—reach that its campaign has had. The wraparound service is so important. I note, too, that Sam Heughan is also an ambassador for the charity because his brother Cirdan was diagnosed with testicular cancer. That engagement is incredibly important. In closing, I make clear the Scottish Government’s enduring commitment to improving testicular cancer awareness. In doing so, we can improve early diagnosis rates as well as patient experience and overall outcomes.”
“As I said, I have spent some time looking at its website, which has some fantastic resources, including how to carry out self-checks and—as Clare Haughey and Elena Whitham mentioned—a text service to send reminders to do that. It is absolutely correct that education saves lives. I will touch on Beatrice Wishart’s question about the SURE unit in Aberdeen. The Cabinet Secretary for Health and Social Care has been dealing with that and I understand that NHS Grampian is committed to refurbishing an alternative site, with the intention to “provide an excellent facility for ... the Sure unit”, but I will follow up in writing with the member after the debate. I thank Fulton MacGregor for sharing his personal experience of, and engagement with, the annual “Check your bawballs” campaign each December.”
“That may be one way of reducing the impact quite quickly and simply. Jenni Minto: I thank Edward Mountain for his suggestion—I am happy to take it away and explore what more we could do. As I said earlier, his analogy was extremely helpful—it can basically be summarised as saying that we have to listen to our bodies and make sure that we speak to the doctor. I will certainly take away Mr Mountain’s suggestion. As Marie McNair and every other member has said, Cahonas Scotland is the only dedicated testicular cancer charity. It absolutely recognises the value in educating everyone about the signs and symptoms of that cancer and the importance—as I mentioned—of early detection through regular self-checking, and its work is invaluable.”
“As others have said, although testicular cancer is a relatively rare cancer, it is the most common type of cancer to affect men between 15 and 45. However, it is also one of the most treatable types, and survival rates are among the best for cancer. However, as we have heard, unfortunately, men are often reluctant to seek healthcare advice and support, as evidenced by a recent health insight survey from the Office for National Statistics. I hope that the debate tonight has allowed people the ability to speak much more about testicular cancer. Edward Mountain: One thing is clear: testicular cancer often runs in a family. Is there any way, therefore, that the minister could direct the health service to alert people who have testicular cancer in their family to carry out the checks on a regular basis?”
“Again, that is a campaign that encourages and empowers people—it tries to reduce the fear and stigma of cancer, which has been talked about today, and it encourages people to act as early as possible. Our get checked early online resource has a wealth of information on testicular cancer. The interview with Paul McCaffery of Cahonas Scotland, who—as other members have said— has lived experience, is well worth watching and learning from. I am delighted to hear that he has accepted an invitation to attend a reception at Buckingham palace this week to spotlight Cahonas Scotland’s work at a celebration of community-based initiatives raising awareness about cancer and supporting those living with cancer.”
“We all know, and Marie McNair highlighted, that April is testicular cancer awareness month. To mark that, the Scottish Government lit up St Andrews house in blue on 16 April, and we will continue to do that every year. We also continue to invest in our detect cancer earlier programme. Every member who has contributed to the debate tonight has commented on the importance of detecting testicular cancer earlier, and we very much recognise that the earlier cancer is detected, the easier it is to treat. We therefore continue to invest in cancer diagnostics and efforts to reduce waiting times. We also reran the award-winning “Be the early bird” awareness campaign in March.”
“Paul Sweeney talked about Chris Stark from Capital Radio and previously Radio 1, who is someone that younger people will know about. Paul was correct when he talked about changing the narrative, which is exactly what Finlay Carson just indicated in his intervention. As Elena Whitham said, we all need to set aside our blushes and ensure that we can talk about the subject, and there are opportunities in the chamber to allow us to do that. In June 2023, the Scottish Government published an ambitious 10-year cancer strategy, and we remain absolutely determined to improve cancer survival rates and provide excellent and equitable care for all people who are facing cancer. The strategy takes a comprehensive approach to improving patient pathways in cancer, from prevention and diagnosis through to treatment and post-treatment care.”
“Perhaps we should have more people saying that they had a concern and went and had it checked and it was fine; that may encourage more men to go. Jenni Minto: Absolutely, and that is certainly how my colleagues Clare Haughey and Elena Whitham described the process of breast cancer awareness and checking. Cahonas Scotland has made that sort of thing so accessible on its website. Marie McNair asked me to talk about the education side and the importance of recognising that it is young men from 15 onwards who could be diagnosed. That is something that the website does really well. It shows a father and son, and I think that the choice of Seán Batty to do the interview is inspired, given that he is so well known and recognised.”
“I absolutely agree with Finlay Carson: men can speak about these issues in more relaxed circumstances— perhaps more relaxed than in this chamber, although I think that we have done really well tonight. I recognise that from visits that I have been on with regard to other cancers. One woman spoke to me about the fact that, when she learned more about her reproductive health, she was able to share that with her husband, who was then able to speak about that when he was out with his friends. Finlay Carson: One of the issues is that if a man has an issue and gets it checked, he is not likely to talk about it. Sadly, too often, it is only when men are diagnosed with testicular or prostate cancer that they go out and talk about it.”
“I, too, thank my colleague Marie McNair for bringing this motion to the chamber today, and for reminding us all of the impact that diagnosis and treatment of testicular cancer can have. In addition, I thank Cahonas Scotland for its continued efforts to raise awareness and support those who are affected by testicular cancer. It is great to see its representatives here tonight, and I welcome them to the chamber. I also thank all my colleagues who have contributed to the debate and shared their insights. I say to Edward Mountain that he certainly did so in the best possible taste. The underlying comment in all the contributions has been that men—and women—need to speak about the various cancers that exist.”
“The Scottish Government is aware of that serious problem and is currently seeking to understand the nature of the way in which false and misleading information affects the health outcomes of Scotland’s people—leaning heavily on international best practice and the latest academic research. NHS Inform and supporting immunisation materials are frequently reviewed and updated for accuracy, ensuring that the public can access the latest available information on vaccinations.”
“It is reassuring that childhood vaccination rates remain high in Scotland, particularly as we know that the perceived minor illness that those vaccinations protect against can cause disabilities or even fatalities. However, misinformation and conspiracy theories in relation to vaccinations, often fuelled by social media, have become all too commonplace. Can the minister advise what the Scottish Government is doing to tackle the issue and ensure that parents and carers have the correct factual information that they require to protect children’s health? Jenni Minto: I thank Ms Haughey for her supplementary question, which raises a very important issue.”
“Childhood immunisation rates across NHS Lanarkshire continue to be among the highest in Scotland, reflecting the hard work and commitment of our colleagues in the NHS. Vaccination remains one of the most important public health interventions, but compared with previous years, we have seen decreases in uptake in Scotland, as well as globally. We are working with Public Health Scotland and health boards to improve uptake, address health inequalities and support children who are eligible for vaccinations. I urge parents and carers of young children to bring them for vaccination when invited, to give them the best protection against serious disease. Clare Haughey: I thank the minister for that answer.”
“We know how important research is to people who are affected by ultra-rare conditions, but the fact that very small numbers of people are diagnosed with such conditions presents unique challenges in supporting clinical trials. I was pleased to attend the rare conditions disease day in March in the Parliament, when people with rare conditions made moving and powerful speeches. We know how important research is. Scottish researchers can apply to the chief scientist office and the UK National Institute for Health and Care Research for specific projects. However, for ultra- rare conditions, collaboration across the UK and internationally is essential to enable expertise to be shared, for example with the horizon Europe partnership on rare diseases. General Practitioner Retention 7.”
“Given that my raising of this very rare condition for my constituent is quite possibly the first time that the condition has been raised in the chamber, what steps can the Scottish Government take to ensure that more research is carried out on Turnpenny- Fry syndrome, so that people who are diagnosed with it now and in the future can get the help that they need and are entitled to expect? Jenni Minto: I am very sorry to hear about the difficulties that Harper’s family have experienced. I assure members that the Scottish Government expects national health service boards to provide safe, effective and person-centred care, and I hope that the Kelly family are now getting appropriate support.”
“Mr Kelly advised me that, due to the rareness of the condition, the family are struggling to get any support for Harper and feel that they are being passed between different health agencies. As a result of that lack of support, including for very practical things, the family have not been able to get incontinence products from the health board. Since being contacted by Mr Kelly and my office, NHS Lanarkshire has reached out to the family, and I hope that that contact will lead to appropriate support being put in place. However, I think that there is a bigger issue.”
“The Scottish Government remains committed to improving the lives of people with conditions such as Turnpenny-Fry syndrome. Genetic testing for TFS is accessed through one of Scotland’s four regional clinical genetics services, which provide essential support to families after diagnosis, including genetic counselling and guidance on any further testing that may be necessary. Fulton MacGregor: Just last week, my constituent Paul Kelly contacted me about support for his seven-year-old daughter, Harper, who I believe is the only individual in Scotland who has been diagnosed with Turnpenny-Fry syndrome. I am told that she is one of only five people to have been diagnosed with the condition in the United Kingdom.”
“I recognise that heart conditions need to be treated with importance but that a number of areas of care for heart conditions could be replicated across other long-term conditions. To that end, I met cardiologists and other heart clinicians just last week, and I visited the Royal infirmary of Edinburgh to see more of what it is doing in diagnostics. I absolutely understand where Mr Smyth’s question is coming from, and I commit to continuing to work closely with those who are living with heart conditions.”
“For example, figures from British Heart Foundation Scotland showed that waiting times for cardiology and key diagnostic tests are the longest on record. How will the minister ensure that the Scottish Government and NHS Scotland provide sufficient resource and focus to address what remains one of the leading causes of death and ill health in Scotland? Will she commit to specific actions in any long-term conditions strategy that address the unique needs of people who are affected by heart disease? Jenni Minto: I thank Colin Smyth for his supplementary question and recognise the huge amount of work that he has done as a member of the heart and circulatory diseases CPG. Last week, I had a meeting with the British Heart Foundation, in which we discussed exactly what was behind Colin Smyth’s question.”
“We are exploring a new long-term conditions strategy to better recognise the fact that many people who are living with long- term conditions, including heart disease, need the same types of support and care, regardless of their condition. We will shortly launch a full public consultation on that strategy, and we plan to publish a long-term conditions framework before the end of 2025, with action plans following thereafter. Colin Smyth: In June, the cross-party group on heart and circulatory diseases, which I co- convene, published its inquiry report on the implementation of the current plan. We heard strong support for a specific heart disease plan, but there were concerns that a lack of focus and investment was impacting on implementation.”