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The heart of the matter: the need for standards around congenital heart disease – Dr Liza Morton

Posted on October 22, 2019

Since I was 11 days old, my every heartbeat has been dependant on a pacemaker. I was born with complete heart block, an abnormal heart rhythm that means the electrical impulses that control my heartbeat are blocked and do not reach the bottom chambers (ventricles) of my heart.

The surgery I received in 1978 at Glasgow’s Yorkhill Hospital was a world first. Since then, while I’ve lived a very full life, it’s one that’s been reliant on pioneering cardiac treatment. Life as a ‘heart child’ involved countless invasive, painful and often frightening cardiac interventions. By the age of seven I had been fitted with five pacemakers, each by thoracotomy – my ribs were split to gain access to my heart. Early pacemakers were set at a fixed rate, making active play, gym and sports day impossible. They were unreliable and often needing reprogramming. I remember lying still and feeling dizzy as a team of men in white coats armed with a magnet, leads, cold gel, stethoscopes, and electrodes made my heart beat faster, then slower as they learned how to interrogate the pacemaker. I was a medical curiosity, although my team always did their very best to support us. I needed open heart surgery at 13 years old to repair a hole in my heart and around this time I was fitted with a more physiologically responsive, variable rate pacemaker. The challenges don’t end, last summer I was fitted with my 11^th pacemaker involving complex surgery to extract and replace pacing leads.

“By the age of seven I had been fitted with five pacemakers, each by thoracotomy – my ribs were split to gain access to my heart.”

Complex congenital heart disease (CHD) cannot be cured, but due to medical advances a growing number of people are living with a lifelong heart condition. Babies born in the 1940s, had a 20% chance of surviving into adulthood. Today, the chances for a baby born with CHD living that long are 90%. Yet the success story of enhanced detection, medical and surgical advances yields new challenges which healthcare services have not developed to meet. Having overcome significant childhood adversity, many ‘medical orphans’, once celebrated as pioneers of medical advancements, are being let down in adulthood. But with adequate, reliable care many of us can live full lives.

Developing standards to improve services

Healthcare standards offer a means to significantly improve care by engendering trust, safety and patient empowerment. That’s why I’m delighted to be involved with Healthcare Improvement Scotland’s development group to create standards for CHD, and work with them to enable people with this condition to live as normal a life as possible.

Standards are statements relating to levels of performance that people should expect from health services. They are based on evidence relating to effective clinical practice, feasibility and service provision that is responsive to patients’ needs and views. They cover the key issues relating to the provision of safe, effective and person-centred care and treatment.

It’s been a long journey to get to this stage, supported by the cardiologists, nurses and surgeons involved in our specialist care, who witness daily what it means to live with CHD. Given my own experience, and my voluntary work as the Scottish Campaign Manager for The Somerville Foundation (a UK charity supporting adults with CHD), in 2012 I sought to raise awareness of CHD, submitting a petition to The Scottish Public Petitions Committee at the Scottish Parliament asking for healthcare standards and improved care provision, joining Cross Party Groups, asking MSPs to submit parliamentary questions and lobbying through social media.

“It’s vital that healthcare provision for CHD is underpinned by a psychologically-informed approach consistent with recent drives for trauma-informed care and to address adverse childhood experiences.”

The challenges for people with CHD

But what exactly are the issues that people with CHD can face that the standards will look to address?

CHD is the most common congenital anomaly, affecting approximately 1% of babies. A quarter of these babies require medical intervention in the first year of life. Around 20,000 people with CHD currently live in Scotland. Approximately half of this estimated adult population are lost to specialist services, often having been discharged before the need for specialist lifelong care was recognised.

It’s vital that healthcare provision for CHD is underpinned by a psychologically-informed approach consistent with recent drives for trauma-informed care and to address adverse childhood experiences. While medical advances have saved many lives, they can involve invasive procedures which can be frightening, painful and overwhelming. Early separation due to medical care may also impact on attachment to parents. Living with CHD can reach far beyond any medical limitations to affect schooling, employment, finances, discrimination, missing out and issues having and raising a family, to name a few. Perhaps not surprisingly, CHD significantly increases vulnerability to neurodevelopmental issues, depression, anxiety and post-traumatic stress disorder (PTSD) while parental psychological wellbeing can also be affected. Yet these outcomes need not be inevitable. By adopting a psychologically-informed approach to care, these risks could be mitigated, improving wellbeing, physical health, recovery and ultimately reduce costs.

Although I am grateful to the NHS for saving my life, I have experienced multiple life-threatening challenges in my care provision and a lack of understanding about the psychological impact of living with a serious lifelong health condition. At times, living with CHD can seem relentless. Having to fight for appropriate medical care, at your most vulnerable, can feel overwhelming. The challenges don’t end. Many of the challenges we face occur at a local level, for example, when we present to our GPs and emergency care. Standards for local care provision are vital to inform safe, equitable and consistent care. I am far from alone experiencing these challenges.

We should be proud of our NHS as testament of our collective humanity. But having experienced it at its best and worst since my first pacemaker all those years ago, I want to help to make it better. I owe that in return.

More information

Take part in the consultation on the scope of our congenital heart disease standards.

Liza is a Chartered Counselling Psychologist working in private practice and at Strathclyde University. She is actively involved in research and advocacy to promote psychologically informed medicine and improved care for people living with a heart condition from birth. Liza represents patients on the Standards Development Group for CHD for Healthcare Improvement Scotland. You can follow her on Twitter @drlizamorton.

Categories: Uncategorized

Tagged: impact campaign

How volunteering in NHSScotland can be transformational – Alan Bigham

Posted on October 10, 2019

Volunteering matters. There are an estimated 6,500 directly-engaged volunteers supporting patients, families and communities of NHSScotland, and many thousands more complementing the delivery of health and social care in the third sector. Many roles are centred on interacting with patients on wards; often something as simple as taking some time to have a chat, providing that vital social interaction and company for
people in hospital wards.

There is clear evidence that volunteering has many benefits for patients as well as volunteers themselves. It can improve an individual’s physical and mental health and wellbeing, strengthen social networks and bonds within communities and can also help to create experiences and connections that lead to better lives.

Volunteering roles are extremely varied. From drivers who help to transport visiting relatives or support patients to access support groups, to community volunteers helping with leading ‘healthy walks’, with others providing peer support to new mothers who are breastfeeding. The annual value of volunteering in Scotland is estimated to be £2.26 billion – it is clearly of great social and economic importance to the people and communities of Scotland.

“There is clear evidence that volunteering has many benefits for patients as well as volunteers themselves. It can improve an individual’s physical and mental health and wellbeing, strengthen social networks and bonds within communities and can also help to create experiences and connections that lead to better lives.”

Being able to demonstrate the impact of volunteering throughout NHS Scotland was of central importance to me when I took on the role of leading the Volunteering in NHSScotland Programme in the Scottish Health Council and Healthcare Improvement Scotland. A key objective of my role has been to help NHS Boards to develop their local volunteering into sustainable and robust programmes.

Since the work began in 2011, the impact of the programme has included:

Four NHS Boards creating paid roles to manage and support volunteers and another NHS Board almost doubling its volunteer management staffing from four to eight WTE
Influencing NHS Boards to adopt more sustainable volunteer management models, reducing the ratio of volunteer manager to volunteer to a far more sustainable and reliable level (from one manager to 144 volunteers in 2012 to one manager to 36 volunteers in 2017)
Deploying the Volunteering Information System across 18 of the 22 NHS organisations, increasing information governance and legal compliance, improving the efficiency and accuracy of reporting and reducing the administrative burden on volunteer managers to free up their time for their core work.

The influence and outputs of the Programme help to ensure that leadership for volunteering is embedded at a strategic and operational level across NHSScotland. Our work in developing policies and processes assist volunteering programmes to increase efficiency and compliance.
Additionally, the responsive nature of the Programme helps NHS Boards adapt to meet emerging needs.

“Being able to demonstrate the impact of volunteering throughout NHS Scotland was of central importance to me when I took on the role of leading the Volunteering in NHSScotland Programme in the Scottish Health Council and Healthcare Improvement Scotland. A key objective of my role has been to help NHS Boards to develop their local volunteering into sustainable and robust programmes.”

Within NHS Boards, volunteering can be traced back as far as 1970. The engagement of volunteers in health and social care has shown the impact it can have on volunteers, staff and patients. In collating case studies of volunteering, volunteers and staff told us that:

Volunteers have a positive impact on staff time and morale
Volunteering reduces social isolation for patients and volunteers
Patients look forward to seeing someone who’s not in a uniform
Volunteers have a positive impact on volunteers, providing structure, quality of life and improving confidence and self-esteem.

Over the past two years we have been contributing to the development of ‘Volunteering for All’ a national outcomes framework for Scotland. We’re now in an implementation phase where our contribution will be developing and publishing case studies of volunteering in health and social care that demonstrate progress towards these outcomes.

It’s only by demonstrating the impact of volunteering that we will break down the last remaining institutional barriers and myths on the subject. It can be transformational for the lives of many people, and has been so for myself.

More information

Read the ‘Volunteering for All’ Framework on the Scottish Government website.

View Scottish Health Council’s series of videos showcasing case studies from volunteers.

Alan Bigham is Programme Manager (Volunteering) with Scottish Health Council, part of Healthcare Improvement Scotland.

Categories: Uncategorized

Tagged: impact campaign

Screening for swollen aorta is vital to saving lives – Vascular Disease Awareness Month – Dr Zahid Raza

Posted on September 25, 2019

Breast screening. Cervical screening. Bowel screening. These may be familiar to you. You may have even participated in one or more of them. These are three examples of the eight national population screening programmes in Scotland.

Screening for abdominal aortic – more commonly known as AAA screening – is one that many people may not have heard of before.

An AAA is a swelling (aneurysm) of the aorta. The abdominal aorta is the main blood vessel that leads away from the heart, down through the abdomen (stomach) to the rest of the body. Aneurysms are a type of vascular condition. This is the collective term for diseases of the arteries, veins and lymphatics (tissues and organs that help rid the body of toxins, waste and other unwanted materials).

If you live in a town with around 30,000 people – for example, Wishaw in North Lanarkshire – at least 1000 men may be living with an AAA at any given time. Vascular conditions account for 40% of all deaths in the UK. Crucially, many of these deaths are entirely preventable.

“If you live in a town with around 30,000 people – for example, Wishaw in North Lanarkshire – at least 1000 men may be living with an AAA at any given time.”

The importance of screening for AAA

As a vascular surgeon, I regularly see men with large AAAs who have been referred to me from the national AAA screening programme. They are referred to me because at the stage where the aorta is 5.5cm or more, the risk of it rupturing is usually higher than the risks associated with the surgery that my colleagues and I perform to repair it.

AAA screening aims to find aneurysms early and monitor or treat them. You may be unaware that you have an aneurysm as AAAs usually show no symptoms. If you do have an AAA and your aneurysm remains undetected it can grow to a point where it can burst. This is a life-threatening emergency and unfortunately many people (around 50-80%) will die from aneurysm rupture –almost half of them before reaching hospital.

Routine AAA screening is offered to eligible men during the year they turn 65. Women, and men under 65, are not routinely screened for an AAA because most ruptured AAAs occur in older men aged over 65. Men are six times more likely to have an AAA than women. Staggeringly, AAAs are estimated to be present in almost 5% of the male population of Scotland aged 65 to 74.

“Routine AAA screening is offered to eligible men during the year they turn 65. Women, and men under 65, are not routinely screened for an AAA because most ruptured AAAs occur in older men aged over 65. Men are 6 times more likely to have an AAA than women. Staggeringly, AAAs are estimated to be present in almost 5% of the male population of Scotland aged 65 to 74.”

What’s involved in AAA screening

Screening to identify whether you have an AAA involves an ultrasound scan of your abdomen. A technician who specialises in AAA screening will measure the size of your aorta (it’s usually around 2cm wide). Most men have a normal result (an aorta measuring less than 3cm) and are discharged from the screening programme. If you do have an AAA and it measures between 3cm and 5.4cm you’ll be asked to return either annually or every 3 months depending on what size it is. Men who have a large aneurysm of 5.5cm and over will be referred to a hospital vascular department to discuss AAA treatment options with someone like me.

Why standards for AAA screening are important

Along this journey patients will meet numerous healthcare professionals – from the ultrasound technicians, specialist nurses, anaesthetists, ward staff, theatre staff and of course, me.

All of the team that supports the AAA screening programme in Scotland work together to ensure that patients experience a safe and high quality standard of care and support. Healthcare Improvement Scotland has recently initiated a project to revise the AAA screening standards which were originally published in 2011. The standards will specify a minimum level of performance for AAA screening services and will apply to all healthcare organisations and all the people who will assist patients on this journey to potentially save their life.

I’m delighted to be chairing the AAA screening standards development group and look forward to working with colleagues from the AAA screening community including those with lived experience of the programme to ensure high quality care for everyone.

More information

Find out more about Vascular Disease Awareness Month

Read the latest standards for AAA screening

Dr Zahid Raza is Chair of the AAA Screening Standards Development Group and a vascular surgeon with NHS Lothian

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Tagged: impact campaign

Let’s talk about dementia: dementia awareness month – Marina Logan

Posted on September 16, 2019

It’s September which means its World Alzheimer’s Month – the annual international campaign to raise awareness and challenge the stigma that surrounds dementia.

My family’s medical history has largely been characterised by heart attacks and strokes so dementia wasn’t something I had ever particularly worried about. How wrong was I? It transpired that, at various points between late 2013 and early 2014, my mum had a series of mini strokes. There were no obvious physical signs so neither we, nor mum, realised what had happened. These mini strokes interrupted the blood supply to the brain, and this is what caused her to have vascular dementia.

“It was little things the family noticed at first, things we put down to old age forgetfulness. She was in her 80s after all. At that age, anyone could put a pot on the hob and forget about it or not know what day or year it was. It really only became obvious when she couldn’t remember her own address.”

It was little things the family noticed at first, things we put down to old age forgetfulness. She was in her 80s after all. At that age, anyone could put a pot on the hob and forget about it or not know what day or year it was. It really only became obvious when she couldn’t remember her own address – she’d only lived there for 50 years! She laughed that off and said we were ‘being daft’ but it got worse. She became confused. Simple things became a challenge, like turning on the living room fire, she was convinced someone had changed the dials. She thought we were hiding things in the house to confuse her. She got frustrated and this made her quite ‘sweary’ – which could occasionally be funny when it wasn’t mortifying. Although mum had never been shy about speaking her mind, she was inappropriate at times, losing the filter that stops a person saying whatever they fancy about someone loudly in the street (again, mortifying!). Mum had lived alone since my dad died in 1996, so my brother, two sisters and I checked on her every day, visiting and phoning, and we were supported by her GP.

“I’m so proud of the work that Focus on Dementia does, in partnership, to improve the experience and quality of care and support for people living with dementia, carers and staff.”

We were lucky, in a way, that mum only lived like this for maybe 6 months. On 21 April 2014 we were left devastated when she had a major heart attack and stroke. She was in hospital until 17 June, then we were allowed to take her home to care for her, supported by the amazing community nurse team, until she died on 29 June.

I’m so proud of the work that Focus on Dementia does, in partnership, to improve the experience and quality of care and support for people living with dementia, carers and staff. Dementia can touch anyone’s life but with the right support it’s possible to live well and continue to be an active, valued member of society. The more information we have the better, the more we talk about dementia the better. So get involved, become a dementia friend, read more on the Alzheimer Scotland website, or come and talk to the Focus on Dementia team or visit the Focus on Dementia webpage.

Marina Logan is a Project Officer within the Focus on Dementia team of Healthcare Improvement Scotland

Categories: Uncategorized

Tagged: focus on dementia, ihub

Early warning system for sepsis means I got to celebrate my daughter’s first birthday – Caitlin O’Neill

Posted on September 12, 2019

Saturday 29 June was my daughter’s first birthday. It was a day I nearly didn’t get to see. Just a week after Hallie was born, I had to be carried into hospital by my dad. I had maternal sepsis, and if it hadn’t been for an early warning system used by the hospital, Hallie wouldn’t have a mum.

I had no idea what MEWS – the Maternal Early Warning System – was when I went in to hospital to give birth. But I now know that it saved my life. That’s why I want to tell people about what happened to me, to help support Healthcare Improvement Scotland as they encourage hospitals across the country to use MEWS.

I found out I was pregnant when I was 20. It was a bit of a shock at first, finding out I was going to have a baby, but once me and Dale, my boyfriend, got over it, we were fine.

The pregnancy was fine, but Hallie was two weeks overdue – she had no intentions of coming out. When she finally arrived it was a great feeling, but she was purple, like a wee alien.

I never felt 100% after the birth, but I thought that was normal, I was tired, that was how every new mum felt. But a week later I started to feel really bad. Getting up was a struggle and I was in constant pain. I kept feeling hot and cold, like I had flu. Then I started being sick, sweating. I went to bed and woke up not knowing where I was. I dreamed I was in hospital. Now I know that when I dreamed that, I was actually in hospital.

I’d phoned my mum when I started feeling bad, because I basically started having a panic attack. She works at Monklands General, thought there was something more going on and wanted to take me to hospital. Dale said by this stage I was speaking slow and not really making sense. My dad drove me to hospital and had to carry me from the car as I was so weak and kept being sick.

When we got in there they put ice on me to cool me down but I told them I was too cold and started throwing it back at them. I kept hallucinating that Hallie was there, looking for her under the covers. Apparently my temperature went up to 41 degrees and then I just passed out. I don’t remember anything else. They told me later that if we’d been 10 minutes later I probably wouldn’t have made it.

Once they got me stable they put me in the high dependency unit. When I finally came round properly Dale was in the room and Love Island was on the telly. I can only remember bits of things. I remember my arms being covered in marks from the injections, and really aching. They put me in a mother and baby room and Dale bought Hallie in but I could barely lift her because my arms hurt so much – it was like trying to pick up a dead weight. I remember saying ‘I can’t deal with this anymore!’

When I was well enough they moved me to a maternity ward. I remember they did Hallie’s first hearing test on the ward so I could be there. I later found out I’d only been in hospital a week. It felt much longer.

For a while afterwards I kept dreaming I was in hospital. I’d have nightmares and Dale would have to calm me down. Now I know it was panic attacks from the flashbacks I was having. Dale was able to explain what had happened to me and it helped me understand where it was all coming from.

Because I wasn’t fully aware of what was happening to me, it doesn’t affect me, day to day. But sometimes even now I think “that was scary”. In some ways it was a blessing that I didn’t know. Sepsis is an awful thing, but the fact the doctors and nurses were able to act so quickly when they saw the state I was in, that saved me – and it meant that Hallie still has her mum. Knowing the MEWS system they used to save me is going to be used across Scotland is great. The more doctors and nurses are able to recognise sepsis early, like they did in me, the more wee babies get to keep their mums.

Caitlin O’Neill is a mother of one and bowling alley manager from Larkhall.

More information

Find out more about MEWS

Categories: Uncategorized

Tagged: impact campaign

How quality improvement is helping to keep mums and babies together – Colin Peters

Posted on September 12, 2019

Evidence shows us that bonding between mother and baby is hugely important. As part of the Scottish Patient Safety Programme’s improvement work for maternity, neonatal and children, we’ve been working with NHS boards across Scotland to safeguard the natural bonding of baby and mother by addressing issues that evidence tells us we can directly influence: breathing problems, body temperature, infection, low blood sugar levels and feeding challenges.

For parents-to-be, pregnancy is an exciting time planning for the new arrival. The last thing parents imagine is their baby requiring admission to the neonatal unit. When it happens it can be a difficult emotional journey for all members of the family. The resulting separation decreases the opportunity for temperature regulation and stabilisation of vital signs including breathing rates, and has a negative effect on maternal mental health, breastfeeding success rates and long-term morbidity for mother and child.

The result of the work thus far is that the number of babies separated from their mothers and placed in neo-natal units shortly after birth has been reduced by 20% in eight major neonatal units in Scotland that we’ve been working with.

Speaking to the neonatal community, they identified that decreasing the number of mothers separated from their babies was an area of need where a positive impact could be made.

Data submitted to us from NHS boards across Scotland suggest that for every 1,000 babies born at term, around 60 are admitted to the neonatal unit. According to research, over 20% of term admissions to neonatal units could have been prevented.

The result of the work thus far is that the number of babies separated from their mothers and placed in neo-natal units shortly after birth has been reduced by 20% in eight major neonatal units in Scotland that we’ve been working with. This means around 30 more babies each month in Scotland receive care at the bedside, beside mum, resulting in less disruption to breastfeeding and better long-term outcomes for both mum and baby.

The figure underlines the dedicated work of the Scottish Patient Safety Programme’s Maternity and Children Quality Improvement Collaborative (MCQIC). It’s a good news story. So good in fact that we were delighted that The Times recently picked up the story and published it.

NHS Tayside’s ‘Unite: keeping families together’ project is a good example of the type of work NHS boards have been undertaking. Through analysing their data, the team identified that almost half of neonatal admissions were attributed to babies born over 37 weeks of pregnancy.

The result of their interventions is that the unit has seen a 21% reduction in the number of babies admitted to neonatal unit and thus separated from their mum.

To find out why, the team at Tayside further analysed the data and found that breathing complications, weight loss from breastfeeding challenges and cold body temperature were the main reasons for these admissions. The result of their interventions is that the unit has seen a 21% reduction in the number of babies admitted to neonatal unit and thus separated from their mum.

We will continue to work with NHS boards across the country to implement this work, and see more mums and babies forging an unbroken bond that allows them both to thrive.

More information

Visit the ihub website to read our impact story

Dr Colin Peters is Consultant Neonatologist at Royal Hospital for Children, Glasgow and SPSP Clinical Lead for Neonatal Care

Categories: Uncategorized

Tagged: impact campaign

“Nuggets of reality” that make a difference when it comes to accessing new medicines – Nancy Greig

Posted on August 22, 2019

Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD), affecting more than 300,000 people in the UK. New prevalence figures emerging from a number of studies indicate the actual number could be significantly higher (one study at the University of Edinburgh has revealed that one in 125 people in Edinburgh have Crohn’s or Colitis). Yet they are largely hidden diseases that cause stigma, fear and isolation.

Because of this, Crohn’s & Colitis UK are always looking for opportunities to raise awareness of these conditions and the needs of people with them. Making a submission to the Scottish Medicines Consortium – part of Healthcare Improvement Scotland – when a new drug is being appraised for routine use within the NHS in Scotland is a vital part of what we do to support those with Crohn’s and Colitis.

Our role as a patient group is to ensure SMC Committee members consider the difference that potential treatments may make to the lives of people with Crohn’s and Colitis and their carers. Medicines are vital to managing and treating the symptoms of Crohn’s and Colitis, as well as extra-intestinal symptoms and complications. Being able to access the widest and most innovative range of evidenced-based drug treatments is therefore fundamental.

Plenty of support and advice is provided by SMC’s public involvement team, who work in partnership with you throughout the submission process. They can help with developing the written patient group submission and provide support in participating at the committee meeting. The team is very approachable, and I would encourage any patient group with an interest in access to new medicines in Scotland to get in touch with them.

We gather a lot of the evidence for our submissions from patients via our website and social media channels. Those who respond tend to be keen to actively participate and contribute to decisions about future treatments and new technologies. For me, what makes a good patient group submission are the ‘nuggets’ of reality that we and those we support can provide. Everyone knows someone living with Crohn’s or Colitis, yet how much do most of us understand about the impact of these conditions on people’s education, work and relationships?

These are lifelong diseases with lifetime medical costs comparable to other major diseases such as diabetes and cancer. It costs the NHS two to three times more to treat people experiencing a flare up of their condition compared to those in remission. Careful use of patient quotes to illustrate factors like these, the true impact of these conditions on people’s daily lives and the difference a new medicine could make if it was routinely available in NHSScotland are what really makes the difference in a good patient group submission.

However, our two most recent submissions to SMC had different outcomes. Darvadstrocel (Alofisel) is an innovative stem cell technology to treat complex perianal fistulas. Perinal fistulas can be extremely debilitating, causing intense pain and discomfort and meaning even simple activities such as sitting down can be difficult. Unfortunately SMC did not recommend this medicine because the evidence from the manufacturer on the cost-effectiveness was not deemed strong enough to merit routine use within the NHS. Nevertheless I believe that our submission was strong in terms of highlighting the huge unmet need for patients in this area and the sometimes gruelling nature of living with fistulae.

More recently we made a submission on new oral drug tofacitinib (Xeljanz) for ulcerative colitis. This was accepted for use in Scotland. For some people with ulcerative colitis, treatment options run out or they may carry on with a limited quality of life when they lose response to medicines. For them, tofacitinib offers fresh hope, particularly for those wishing to avoid or delay surgery to form a stoma or pouch (for example to complete studies or have children). I believe that the testimonies within our submission helped to make the case for this new option clearer.

As Crohn’s & Colitis UK develop our new Patient Engagement Strategy, we will be asking all those who respond to calls for evidence around Health Technology Appraisals to join our Patient Voices Network. I hope that in future members of this network will have the opportunity to influence and contribute to decisions about medicines.

By taking an active role in engaging with bodies like SMC that regulate the availability of treatments on the NHS, I believe we are punching above our weight as a patient group, harnessing the powerful and valuable voices of patients and their carers to make a real difference for the future.

Nancy Greig is the Health Service Project Manager for Crohn’s & Colitis UK.

More information

Categories: Uncategorized

Tagged: Advice on new medicines, impact campaign, public involvement