NICHS aims to utilise findings from ours and other people’s research to inform chest, heart and stroke policy areas that we want to influence and change. We also listen to local people and clients to hear their needs and issues, which are reflected in the areas we want to influence and change.
We use this feedback and research evidence to influence our decision makers such as health care leaders, civil servants, politicians and the Government to improves the lives of our Northern Ireland chest, heart and stroke community who we have represented for over 70 years.
- Coronary Heart Disease (CHD) is a leading cause of disability and deaths in NI
- Around 17 people per day attend the hospital with a heart attack and around 5 people per day die from CHD in NI.
- Education, early detection, prevention and community support is needed to reduce these numbers and improve health.
Cardiac Waiting Lists
NICHS are extremely concerned about the length of waiting lists in Northern Ireland which are much worse than any other part of the UK. Waiting lists for diagnostic tests such as echocardiograms are unacceptably long, and we have pressed government to address the workforce issues that are part of the problem.
Waiting lists for inpatient and outpatient appointments are also excessive and must be addressed as part of the drive to transform the health service in Northern Ireland.
- We will continue to raise this issue and call for further action to reduce waiting lists.
Out-of-Hospital Cardiac Arrest (OHCA) - CPR and Defibrillation
Cardiac arrest is a critical medical emergency, where the heart stops pumping blood around the body. In Northern Ireland in a typical year over 1,400 people suffer an out-of-hospital cardiac arrest. Early cardiopulmonary resuscitation (CPR) and a defibrillator shock are vital to a person's chances of surviving a cardiac arrest which is reduced by 10% for every minute of delay without early cardiopulmonary resuscitation (CPR).
NICHS is a long-standing member of the Departments of Health NI Community Resuscitation Strategy Group, chaired by the Northern Ireland Ambulance Services. Our aim is to increase survival for those who suffer an out-of-hospital cardiac arrest by having more people in the community trained to perform CPR and to use an automated external defibrillator.
NICHS Strongly supports:
- The provision of life–saving equipment in the community which is registered on the NI Ambulance Service Website, however NICHS does not itself provide equipment
- Encourages People to undergo CPR training, but NICHS does not itself provide training. We recognise that training in the use of defibs is not essential. People are encouraged to call 999 who will talk people through how to carry out CPR and use the defib
- Compliance with NIAS’s ‘Advice and Best Practice Guidance for the use of Automated External Defibrillators (AED’ if purchasing an AED for their organisation or community).
Congenital Heart Disease
Congenital heart disease is a heart condition or defect that develops in the womb before a baby is born. Over 200 babies are born annually in Northern Ireland with congenital heart disease, approximately 50 of whom will have heart surgery in the first year of their lives. In addition to raising awareness of this issue and funding the Baby Heart Research that looked at which environmental factors increase the risk of a baby being born with CHD, NICHS also campaigns for services to give the baby the best chance in early life including children’s heart surgery.
- Following a review of services in Northern Ireland and the Republic of Ireland it was decided that an all-island children's heart surgery network would be developed, with most surgery being carried out in Dublin. This was to ensure the best service possible in a sustainable manner.
- NICHS supported this development and will continue to keep a close eye on this service to ensure our children are receiving excellent care, services and improved outcomes and families are supported during this difficult time in their lives.
Familial Hypercholesterolemia (inherited high cholesterol gene)
Around one in 500 people has FH, an inherited condition that increases cholesterol levels from birth. Most people are unaware that they have it, but if left untreated around half of men affected will develop heart disease by age 50 and approximately 30% of women by age 60.
- The success of Northern Ireland Chest Heart and Stroke’s campaign to establish a screening service for Familial Hypercholesterolemia (FH) means that hundreds of lives will be changed and many lives saved across Northern Ireland.
- The project is run by the Public Health Agency and has been developed and funded in partnership with Northern Ireland Chest Heart & Stroke and the Health and Social Care Board.
- NICHS continues to take an interest in this new service, supporting its development and roll out across NI
- Currently in NI there are 40,955 people living with COPD (2% of the population) (2)
- 122,178 people living in NI are living with asthma (7% of the population) (2)
- In 2017, diseases of the respiratory system accounted for 13% of all deaths (2,145)– note this figure excludes lung cancer and asthma
- COPD accounts for 47% of all respiratory deaths
NICHS are working with a range of clinicians to organise and develop a programme of asthma education initially with healthcare professionals and primarily aimed at improving care for children. We are also seeking to do more promotional work in schools.
Generally asthma care has not improved as much as hoped in recent years. NICHS believe that by replicating some of the developments in countries such as Finland there is an opportunity to significantly improve the situation for asthma sufferers in Northern Ireland
NICHS’s Breathing Better Support Network is a collaborative service provided by NICHS, Health and Social Care Trusts (HSCTs) and local leisure facilities. It incorporates NICHS’s Respiratory Family Support, ‘Taking Control’ Self-Management Programme and Respiratory Support Group, with HSCTs’ pulmonary rehabilitation programmes and maintenance exercise classes offered by leisure centres, which are part funded by PHA.
In addition to providing care and support services, NICHS runs various education campaigns and health promotion services to increase awareness, prevention and early detection.
COPD is largely a preventable condition, and its risks can be reduced by avoiding smoking, the most common cause for COPD.
NICHS campaigns for
- increased awareness and referrals and access to our Breathing Better Services with a large focus on self-management of the condition to improve quality of life and enhanced independence
- early detection and prevention by calling on further reduction in smoking rates and in particular to close the inequality in smoking with 30% smoking in less affluent areas compared to 18% for the general population
Smoking is the single greatest cause of preventable illness and premature death in Northern Ireland, killing around 2,300 people each year. NICHS believes it is imperative, therefore, that government takes all reasonable measures possible which it believes may reduce the prevalence of smoking.
- Our successful campaign was for legislation to ban smoking in cars carrying children. Thankfully this will now come into force in early 2022.
E – Cigarettes
We recognise that some smokers may choose to use e–cigarettes to help them cut down and/or quit and we recognise they are safer than using normal cigarettes. We don’t know, however, about their long–term effects. We recommend that you use the currently approved smoking cessation programmes, products and medicines. We currently do not support a ban on the use of e–cigarettes in buildings and places where a ban on smoking is in operation.
- NICHS supports a ban on the sale of e–cigarettes to under 18 year olds and in NI legislation has been passed to that effect. It will now come into force in 2022.
Tobacco Retailers Act (Northern Ireland) 2014
We supported this Act which creates a register of all tobacco retailers and introduces new sanctions for those found guilty of selling to children. We worked closely with the Assembly in support of amendments to strengthen the Act. The Act includes changes such as making “proxy buying” (buying cigarettes on behalf of a person under 18 years old) an offence.
- We strongly support the ‘escalator’ by which tobacco tax and increased every year ahead of inflation. There is strong evidence that this is the most effective method of encouraging people to give up smoking.
- We believe that smokers should be offered a comprehensive range of services to help them quit.
- We believe illegal cigarettes are undermining efforts both to persuade people to quit and the efforts to prevent people taking up smoking in the first place. We urge government and HMRC to increase the resources devoted to combating this issue.
We are concerned about the current and future impact of air quality and pollution on our health. Air pollution can exacerbate existing conditions, including respiratory diseases, cardiovascular and circulatory diseases and Coronary Heart Disease.
We are calling for further actions and measures to limit these effects.
A report published by Public Health England in 20142 estimated that in 2010, 553 deaths in over-25s in Northern Ireland were attributable to exposure to anthropogenic (i.e man-made) air pollution.
- Around 2,800 people are admitted to hospital each year due to stroke, and it causes around 800 deaths annually.
- There are roughly 38,000 stroke survivors living in our communities.
- Approximately two thirds of those who survive stroke are left with a life changing disability
We launched our new Stroke Manifesto 'Stroke Reform in Northern Irteland: Time for Action' In September 2021 as a call on the Department of Health and the Northern Ireland Executive to act on stroke reform in NI to improve stroke prevention, treatment and care for stroke survivors and their families.
In 2017, we led stroke pre-consultation meetings and workshops with stroke survivors to inform and influence the process of reforming stroke care in Northern Ireland. The formal ‘Reshaping Stroke Care’ consultation on these changes took place two years later in 2019. Progress on these reforms was already slow and political instability and the COVID-19 crisis have sadly further delayed changes.
Northern Ireland urgently needs not just to press on with the Stroke Review but with the development of a wider Stroke Strategy that addresses prevention, acute care, rehabilitation and support in the community, and our Manifesto outlines ten objectives to achieve improvements across these areas.
We launched our new stroke manifesto document with a ‘hybrid’ online and in-person event taking place at the Long Gallery at Stormont. The event was attended by political figures and leading health officials. The event was addressed by leading stroke consultants from Great Britain and the Republic of Ireland as well as the Chief Medical Officer, Prof Sir Michael McBride.
Atrial Fibrillation (AF)
- Atrial Fibrillation (AF) is a type of irregular heartbeat which can increase risk of stroke by up to five times.
- There are over 40,000 people on the AF Register in Northern Ireland
- Approximately 10,000 people may also currently be living with undiagnosed AF, who are at a much higher risk of stroke.
In 2019/20 an inquiry was conducted into AF detection and management in Northern Ireland. This was led by Dr Niamh Kennedy from Ulster University. The study, commissioned by NICHS, engaged with clinicians at every level across Northern Ireland.
The Inquiry brought forward nine recommendations to be implemented by the Department of Health and other key stakeholders to improve diagnosis, treatment and prevention of Atrial Fibrillation in Northern Ireland.
- Develop an AF strategy for Northern Ireland.
- Aim to identify 85% of people with AF by March 2023 and 90% by 2025.
- Create a clear clinical pathway for AF.
- Invest in technologies in clinical practice to detect AF and monitor treatment.
- Increase AF detection rates by targeted case finding based on AF risk factors.
- Address the echocardiograms (ECG) waiting list issue including tackling any workforce issues.
- Provide information and education to people living with AF.
- Prioritise improving adherence to treatment for existing AF patients to prevent future strokes.
- Commission the Public Health Agency to identify the most effective methods to raise public awareness of AF.
NICHS does believe that prevention is better than cure and that we have to work across government departments and with other partner to achieve health and well-being and reduce inequalities for the people of NI. Our specific goal is to help prevent avoidable chest, heart and stroke conditions.
We also believe that more investment and priority should be directed to promoting healthy lifestyles for our young people, our next generation (Link to Keeping People Healthy and HP Programmes).
Obesity and Physical Activity
Roughly a quarter of adults (27%) were obese with a further two-fifths (37%) classed as overweight. It is clear that there is an obesity problem and that as people age this is likely to turn into a ‘time-bomb’ by imposing more and more demands on the health and social care system.
We believe a concerted suite of measures is necessary to combat obesity. NICHS prioritises measures which can be introduced at a regional and local level while supporting a range of measures that need to be brought forward at and UK or even EU level.
This requires action on food and physical activity.
- NICHS supports action across these areas for example we believe primary schools should provide two hours a week of quality PE to every pupil.
NICHS fully support the efforts of the government as they seek to combat the impact of alcohol consumption in the general population and we look forward to the implementation of such strategy in Northern Ireland. We fully support any developments that can help people make better decisions about drinking
- We support the introduction of Minimum Unit Pricing. We believe this would help combat the issue of the very small number of drinkers who drink extreme amounts of very cheap alcohol.
Northern Ireland Chest Heart and Stroke is a member of the Association of Medical Research Charities (AMRC). All AMRC members support the AMRC position statement on the use of animals in research. NICHS does not typically fund animal research. Please visit the AMRC website for the full statement.
NICHS Covid Position Statement: Development of a public facing Covid Assessment and Support Service
The Covid pandemic has had a colossal impact on the health of the public in Northern Ireland and consequently on the public services including the health and social care sector. To date (end January 2022) over 3,000 deaths have been reported of people who had tested positive for Covid. Over 500,000 positive lab tests have been reported and nearly 16,000 people with Covid have spent time in hospital. 
The total estimated costs of the COVID-19 response in NI, at 31 March 2021, is estimated at over £6.2 billion . The Department of Health estimates that it’s additional spend relating to Covid at 31 March 2021 is £1,062.8m. This has primarily related to ‘front-line’ spending on workforce, service delivery and Personal Protective Equipment. In July 2021 Health Minister Robin Swann formally opened a £10 million fund designed to assist charitable organisations offering support services to people with mental ill health.
In May 2021 the Finance Minister announced the allocation of an addition £316m of Covid funding  including over £60m for Health.
“The £50.5 million resource allocation to Health includes provision to allow the Department to continue the roll out of the Covid 19 vaccination programme. £12m is being provided to help meet the additional costs faced within adult social care as a result of Covid. Funding is also being provided to meet a range of pressures across the Health Service as it continues to recover from the impact of the pandemic, including within Cancer services, Nursing and Midwifery, as well as Cardiology. The allocation includes £1.4 million to support a number of mental health interventions and a further £1 million towards managing the long-term health effects of Covid on individuals.”
To date the NI Executive response has rightly focused on tackling the immediate problems posed by the pandemic and Department of Health has focused on the hospital treatment of those affected and the vaccination of the public.
A focus is now required on the assessment and support of those who have experienced Covid.
Extensive need demands a substantial response.
Surveys suggest that the number of people in Northern Ireland experiencing Long Covid[i] symptoms is between 20,000[ii] and 40,000[iii]. Northern Ireland Chest Heart and Stroke believes it is essential that
1. A comprehensive assessment and support service is put in place.
2. The Assessment and Support Service should offer physical, cognitive, psychological and psychiatric assessments with the aim of providing consistent services for people with post-COVID syndrome (‘Long COVID’).
3. These services should support those who need them, irrespective of whether they were hospitalised and regardless of whether clinically diagnosed or by a SARS-CoV-2 test.
4. Services should have clear pathways to ensure referral into appropriate services which may include rehabilitation, psychological support, specialist investigation or treatment, or to social care support services or the voluntary, community and social enterprise sector. Prioritisation should be based on clinical need.
Strategy for Quality Rehabilitation
The development of Covid Assessment and Support Service must form part of a new Strategy for Quality Rehabilitation. Rehabilitation must be an integral part of the health and social care system.
We must expand and modernise rehabilitation to meet the scale of need, both Covid and non-Covid related, with focus on delivering it in the community and with the help of the community and voluntary sector in addition to the statutory sector.
Long term plans must be put in place to grow the multi-disciplinary rehabilitation workforce, with the appropriate skills and staff numbers.
All aspects of rehabilitation services must endeavour to measure the need and the impact of the services provided.
 NI DOH dashboard 2 Feb 2022 https://www.health-ni.gov.uk/sites/default/files/publications/health/doh-db-010222.pdf
[i] . (The term ‘Long COVID’ includes both ongoing symptomatic COVID-19 (5-12 weeks after onset) and Post-COVID-19 Syndrome (12 weeks or more).
NICHS Covid Support
We established the first community support service in Northern Ireland for people recovering from COVID-19. Our Breathing Better team, who operate our Respiratory Services, set up the COVID Recovery Service in July 2020, initially as a pilot.
The referral service was set up to help adult COVID survivors deal with the physical and psychological problems caused by the illness and to assist them in building up their lung and general health on the, sometimes long, road to recuperation. The service offers support with breathing, fatigue, anxiety and isolation, and sleep.
It is one of a number of services we have either created or adapted to ensure thousands of local people have the support they need to stay healthy and safe during the pandemic. Interest in the service has been overwhelming. The programme has been operating at full capacity - with a waiting list.
Those who have taken part in the Covid Recovery Service have rated the service highly – 95% rated it as excellent and 91% rated the support and advice they received as very good or excellent.
The service is largely funded by donations, although we have received £23,000 from the Public Health Agency for our Long COVID work.
NICHS Respiratory Services
The Covid Recovery Service is part of our long standing respiratory service offer which includes a Family Support Service, Breathing Better and Taking control.
These services have a proven track record of success. Evaluation of these services shows that in addition to improving the health – physical and mental - of individual service users, NICHS is contributing, if only modestly, to improving the health of the population and saving health service resources. Following engagement with NICHS service users report reduced visits to GP, reduced visits to hospitals and reduced emergency admissions.
The service costs over £250,000 a year to provide and, again, this is funded by NICHS through charitable donations.
NICHS is calling on government to reimburse the costs of providing help to Long Covid patients and others availing of respiratory services.
Our ‘Election Asks’ document lays out a range of areas the charity would like the next Executive to tackle including air quality, asthma management, better measures to prevent heart attacks and stroke and better support for those who are recovering from or managing their conditions.