Posts tagged “impact campaign”

Could you be the next Clinical Lead for our neonatal improvement programme? – Colin Peters

Posted on November 16, 2021

As Colin Peters leaves us as Clinical Lead for our organisation’s neonatal improvement work after five years, in this blog he describes the rewards of the role of clinical lead and how he made the role work alongside his day job.

Interesting, rewarding and enjoyable. After five years as the Neonatal Clinical Lead for Healthcare Improvement Scotland, that’s how I would describe the role. Now that I’ve moved on from the role and I reflect on the time with the organisation’s Scottish Patient Safety Programme, I feel grateful for the tremendous support of the team and the engagement of neonatal teams from around Scotland in order to deliver improvements.

There have been lots of highlights during the five years, but I particularly enjoyed the learning sessions where we had such engagement from everyone involved: nurses, midwives, doctors, improvement advisors and more. Post-it notes and marker pens were the order of the day with roaming microphones and ideas aplenty.

While I’ll miss being in the role, it does mean that there is a fantastic opportunity waiting for someone to take up the mantle of Neonatal Clinical Lead.

The role of the MCQIC Neonatal Clinical Lead

So what does the role of Neonatal Clinical Lead entail? First up, the role is essentially for one day a week, so you undertake the role alongside your clinical duties within your NHS board.

The key responsibility is to provide clinical direction to the neonatal improvement work of the organisation. This includes identifying new areas of work and ensuring that existing areas are up to date. Here it’s important to seek new ideas from around the UK and abroad, as well as draw on recent publications, national guidelines and evidence.

Within the role, you get to visit each NHS board to provide support, share ideas, motivate and inspire. I really enjoyed these as I inevitably came away with a new idea or reflection on something that could be developed.

The importance of collaboration and leadership

Working collaboratively with Midwifery and Obstetric Leads and NHS board teams on measures that sit across the whole MCQIC programme, is a vital part of what the clinical lead will do. In my view, improvement in neonatal outcomes depends on improvements in obstetrics and midwifery. The collaborative work on the Preterm Perinatal Wellbeing Package was a fine example of working across teams to come up with a message for everyone caring for a woman delivering prematurely and her baby.

Leadership is another key element of the role, for example, leading sessions at Scotland-wide meetings. These are really interesting sessions with a fair bit of work involved to put together an engaging presentation / session that leaves the delegates inspired to go back to their NHS boards with ideas and a motivation to improve.

You will also develop and participate in regular webinars. These are now more familiar to us all and although talking to your own screen, hoping that there are people out there, is strange, the responses and conversations are really rewarding.

The Clinical Lead for Neonatal will also contribute to national networks and groups. In my time I’ve worked with the Scottish Perinatal Network, the MANDALS group and Clevermed. Strengthening these relationships have ensured that we’ve been able to take consistent approaches across Scotland and avoided duplication of effort.

I’ve found the support from the project officers to be excellent, and I’ve put many of their ideas into practice. Moreover, the support from the Senior Improvement Advisor has been really helpful. I felt that I wanted to come out with more than just having worked one day a week, so I completed the Scottish Improvement Leader course. The new lead may have some particular area or skill that they want to develop.

Ways of working

I tended to work flexibly, especially in the virtual world which now exists on Teams. Before the pandemic I’d work in Delta House (Glasgow) or Gyle Square (Edinburgh) some days, site visits on other days and at home on some days. Sometimes I’d work whole days, on others it would be broken up across a week trying to average one day a week.

And what advice to my successor as Clinical Lead for Neonatal? There is lots of support from all teams within Healthcare Improvement Scotland, so don’t worry about the practical matters of the job. Enjoy, laugh, and don’t be afraid to voice your opinion. Make the role your own.

Colin Peters is Consultant Neonatologist in Greater Glasgow & Clyde and is the former Clinical Lead for Neonatal for Healthcare Improvement Scotland.

Visit NHSScotland to see the list of current job vacancies.

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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.

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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.

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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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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

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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

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“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

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

How equality and diversity can help create better care for all – Mario Medina

Posted on July 25, 2019

You might think equality and diversity has little to do with health and social care, and that complying with the Equality Act is just a tick box exercise that we all feel duty-bound to comply with. Yet I believe that these two factors are crucial in ensuring Healthcare Improvement Scotland’s work has impact, and that it truly improves health and social care for everyone in Scotland.

Assuming that a programme of work will lead to improvements for all, without trying to really understand the diverse needs of those we want to benefit from the work, can lead to us discriminating against individuals, as well as widening Scotland’s health inequalities gap. Moreover, it can be a sure-fire way to ensure that the aims of the project fall short of our intentions.

Assuming that a programme of work will lead to improvements for all, without trying to really understand the diverse needs of those we want to benefit from the work, can lead to us discriminating against individuals, as well as widening Scotland’s health inequalities gap.

As a health body, the Equality Act requires us to eliminate discrimination, advance equality, tackle prejudice and promote understanding across nine protected characteristics: age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation. It’s a responsibility that we all share, particularly as each of us has at least five of the nine characteristics. That’s why it’s important to consider the potential impact of our work at the beginning of each project to ensure that it is set up in order to improve care for as many people as possible. To achieve this, a tick box exercise will fail all of us. To really bring about improvements for all of us, equality and diversity have to be factors that we wholeheartedly commit to.

But how exactly do we ensure that a genuine commitment to equality and diversity is built into our work? Let me give you some examples of strategies that have worked for us.

Our Standards and Indicators team considered how the new cervical screening standards might be received fairly by everyone. Potential issues were identified and action taken to engage with different groups who might be impacted, improving our understanding of how to address these issues. Engagement with minority ethnic people identified potential cultural barriers to accessing cervical screening. The standards therefore included a stipulation about the provision of good quality information and strategies that NHS boards can adopt to identify those most unlikely to attend. We also identified issues from the trans community and built that perspective into the standards to ensure assumptions would not be made based on gender when identifying those eligible for screening.

Due to this type of engagement with people whose views are often under-represented in decision-making processes, we were able to design and develop standards with equality and diversity at their heart.

But to ensure we’re factoring equality and diversity into everything we do, we also need to recruit and retain a diverse workforce. We’ve taken a number of steps to improve in this area. We’re part of the Disability Confident scheme, which helps employers recruit and retain disabled people. Each year we complete Stonewall’s Workplace Equality Index (WEI), a tool for employers to measure their progress on lesbian, gay, bi and trans (LGBT) inclusion. During Mental Health Awareness Week, our staff took part in See Me’s Pass the Badge campaign, which encourages people to talk about mental health. We’ve also successfully recruited Modern Apprentices to Trainee Administrative Assistant roles. These actions and initiatives have improved career opportunities for people from a broad range of backgrounds.

Due to this type of engagement with people whose views are often underrepresented in decision-making processes, we were able to design and develop standards with equality and diversity at their heart.

The real evidence of our commitment to equality and diversity came with the creation of the Margaret McAlees Award in collaboration with Unison’s Scottish Health Care Branch. Established in honour of our late colleague Margaret McAlees, a Unison steward renowned for helping advance equality and promoting diversity, the nominations highlighted some of the great work our staff are doing. Our SIGN guidelines development team promoted the rights of young people to be involved in decisions which affect them, and worked to ensure patient versions of guidelines were accessible for them. The team behind our Scottish Patient Safety Programme for Mental Health were nominated as early adopters of a human rights-based approach to their work and for their efforts to tackle mental health stigma and discrimination. The award winners, our Focus on Dementia team, demonstrated a commitment to improving the lives of people living with dementia over and above what could be expected of them, undertaking voluntary work and participating in fundraising events in their own time. This work has improved the wider public’s understanding of dementia and how it affects people’s lives.

As an improvement organisation, we’re always looking to do things better. That’s no different when it comes to equality and diversity. We don’t want to simply meet our duties, we want to exceed them. I’m delighted to be in a position where I can look back on excellent work that is making equality and diversity a key part of what we do, and also to support its further development.

Mario Medina is Equality and Diversity Advisor for Healthcare Improvement Scotland.

More information

Healthcare Improvement Scotland website