Posts from the “Uncategorized” Category

“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

Positively changing perceptions of disabled people can help HIS achieve equality – Allan Barr

Posted on August 14, 2019

A common perception of a disabled person is that of a wheelchair user. This is, however, only one example, it does not take account of people who have hidden impairments, or the barriers that disable people. Socio-economic, cultural, physical, educational and attitudinal barriers are what truly disable people, not individual impairments.

I have an undergraduate degree in historical studies and a post-graduate diploma in social housing, but as a disabled person, who has encountered all of these barriers, I have spent the majority of my working life in administrative roles.

My experience is, sadly, not uncommon amongst disabled people, and that is why Disabled Persons Organisations (DPO) such as Glasgow Centre for Inclusive Living (GCIL) have evolved to support disabled people achieve meaningful careers.

I am Project Officer with the Standards and Indicators team within Healthcare Improvement Scotland (HIS). The post is supported by the GCIL Professional Careers Programme, and is funded by the Scottish Government and NHSScotland. The programme has been developed in response to a recognition that disabled people are often underemployed. It supports 22 people across all NHS boards, all of whom are qualified to a high level. I am probably the least qualified amongst those on the programme, many have multiple degrees and PhDs, but we all have the experience of applying for jobs with little to no success. It is not unusual for people on the programme to have applied for hundreds of jobs.

I gained my place on the Scottish Government-backed programme through interview selection and it was quickly obvious to me, after taking up my post, that it would have a positive effect on my career. My aim is not only to build my experience, but also to help my team meet its objectives and show others what is like to work alongside a disabled person. People often have pre-conceived ideas of what disabled people are capable of achieving, without realising that lived experience often leads to insight and the development of valuable skills.

Colleagues have been supportive and welcoming from my first day in post, but I have, at times, had to allay some commonly held fears about interacting with disabled people. One example, from when I first started, was that some people considered me a fire risk, as if I might combust! This, I suspect, is because people may have never worked with a disabled person before. It is understandable that they might have been unsure how to ensure health and safety, without causing me offence. It was my role to educate and not criticise anyone for their lack of awareness. A similar awareness raising opportunity came when, at first, colleagues would speak to my Personal Assistant, rather than to me. I used these instances to introduce myself, as I understood that people may have limited, or no experience of interacting with disabled people.

I think it is important that it is not the sole responsibility of disabled people, like me, to promote equality within the organisation. It is vital employers promote a culture of inclusiveness, supported by policies that attract skilled and qualified disabled people into the workplace. I know that my time with Healthcare Improvement Scotland has contributed to this ambition. The fact that I get on with my job and have a laugh with my colleagues, like anyone else, has the potential to positively change attitudes towards disabled people. I experience this every day, as a feel respected and valued by those in my team and the wider organisation.

I am conscious, however, that I am a wheelchair user and represent what people commonly associate with disabled people. It is important, I think, to also promote a positive environment in which people with hidden impairments feel comfortable choosing whether or not to disclose the fact that are disabled people. Those with mental health problems, for instance, often do not reveal their impairment, because of historically negative cultural and societal attitudes. It is my belief that employers such as HIS should foster an environment where people feel comfortable regardless of whether or not they have an impairment.

I have eight months left until the end of my two-year placement and I have felt comfortable from my first day. This is in no small part due to the support of my manager, Fiona Wardell, and my fantastic colleagues in the Standards and Indicators team.

I have been able to take on ever increasing responsibility, because my confidence has grown to a point where I am willing and able to at least try anything. I have, during my time with HIS, produced reports, equality impact assessments, and now I have responsibility for my first project. These are all things that, when I first started, I would have said to myself: ‘how the hell am I going to do this?’ The positive and supportive culture within my team and the wider evidence directorate has encouraged me to attempt anything – I know I will not get thrown out of the door for trying and possibly failing.

My level of confidence is now sufficiently high that I would be disappointed with myself if did not seize every opportunity. This has not always been the case. I have worked in many public and third sector jobs where I worried about failing and being perceived as an imposter. This feeling, from time to time, persists: my inner monologue telling me that I need to prove myself, but that is just me. I am my own worst critic.

I am approaching the final stage of my placement with HIS and I am now thinking about the future. I will be forever grateful for the opportunities given to me by my colleagues, as I now feel that I have a real chance of securing a meaningful career. The most important lesson I have learned during my time with HIS is never be afraid to try, if you do not push yourself you will never grow.

Allan Barr is a Project Officer within the Standards and Indicators Team of Healthcare Improvement Scotland.

Categories: Uncategorized

Tagged: equality and diversity, standards and guidelines

How the Moira Anderson Foundation is helping create a new model of care for children affected by abuse – Gillian Urquhart

Posted on August 9, 2019

Barnahus is a Scandinavian term that most in Scotland will not be familiar with. But that’s all set to change. The word translates as Children’s House (Barn meaning ‘children’ and Hus meaning ‘house’) and the first Barnahus was founded in Iceland in 1998. Since then many countries have developed their own Barnahus model, most in Scandinavia. Closer to home, an English version of Barnahus called The Lighthouse was launched in London in October 2018. Since inception in 2000, MAF has supported people affected by Child Sexual Abuse. We were instrumental in forming the coalition group, Justice for Children in 2002. The clear message given by the group 17 years ago was that children should be nowhere near a court building. So what exactly is…

Categories: Uncategorized

Tagged: children and young people, standards and guidelines

Barnahus – a new model of care and support for children who have experienced abuse – Rachel Hewitt

Posted on August 8, 2019

According to research by Children 1st, children who have experienced abuse may have to tell their story to 14 different people before they get the support they need. Sometimes, children and young people have to tell their stories to people from up to nine different organisations—everyone from their schoolteacher to a High Court judge, which potentially adds more traumatic experiences to those they’ve already been through. To help address this issue, the Standards and Indicators Team within Healthcare Improvement Scotland (HIS) were commissioned by the Scottish Government to jointly develop standards which will outline what a Barnahus model should be like in Scotland. Like many people, the term Barnahus was relatively new to me before I started to work on the standards project. I’d…

Categories: Uncategorized

Tagged: children and young people, standards and guidelines

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

Categories: Uncategorized

Tagged: equality and diversity, ihub, impact campaign, standards and guidelines

How the Scottish perspective is helping combat antibiotic resistance in Ghana – Jacqueline Sneddon

Posted on July 9, 2019

Antibiotic resistance is a threat on a global scale. Protecting these vital medicines for the future is everyone’s problem, not just an issue for one country or continent. There’s little point in ensuring Scotland or even the UK carefully manages its antibiotic use if other countries don’t do the same. There are no boundaries to spread of resistant bacteria. One of the best ways to safeguard these vital medicines is through cooperation and learning from each other. That’s why I’m passionate about sharing the work the Scottish Antimicrobial Prescribing Group (SAPG) have undertaken over the last decade to safeguard antibiotics – and to learn from others’ experiences. Antibiotic resistance is a threat on a global scale. Protecting these vital medicines for the future is…

Categories: Uncategorized

How the patient voice helps identify technologies to stop cancer in its tracks – Claire Donaghy

Posted on July 3, 2019

rptoz Each year more than 3,700 people are diagnosed with bowel cancer, making the disease the third most common cancer in Scotland. It’s also the second biggest cancer killer in the country, with 1,600 dying every year. But it shouldn’t be: bowel cancer is treatable and curable, especially if diagnosed early.

As the Head of Scotland for Bowel Cancer UK, I work to ensure people affected by bowel cancer receive the best treatment and care available. It’s vitally important that any new technology is thoroughly researched and the evidence base reviewed before being introduced to the NHS. The work of the Scottish Health Technologies Group (SHTG) – part of Healthcare Improvement Scotland – ensures this happens, and that’s why I am proud to be involved with them as a Patient Organisation Representative.

To date, I’ve been involved in three different health technology assessments. Each one has been very different but all have the potential to improve the treatment and care people with bowel cancer receive.

To date, I’ve been involved in three different health technology assessments. Each one has been very different but all have the potential to improve the treatment and care people with bowel cancer receive. The first SHTG assessment I was asked to be involved in explored the use of robot-assisted surgery for some patients who have rectal cancer. While SHTG conducted the important task of reviewing the evidence of the technology’s effectiveness by looking at previous studies, they were keen to find out what’s most important to those diagnosed with rectal cancer to ensure their voice also played an important role in shaping the final advice. As a patient group that works closely with patients and their carers, Bowel Cancer UK were ideally placed to help.

In putting together our submission for the review, we wanted to demonstrate what outcomes patients would regard as benefitting them, and what information they would need to make an informed choice about robot-assisted surgery. To do this, we were able to use a combination of our existing knowledge and expertise, as well as gather additional patient views from a short survey we promoted online through our patient forum and social media channels. We found patients wanted fewer treatment-related side effects, faster recovery time and the ability to return to work more quickly. They also valued smaller scars as a result of the surgery, as well as knowing that an experienced team would be undertaking the surgery, plus more information generally about robotic surgery.

These responses helped us provide an informative patient organisation submission, which I presented to the SHTG committee. At the committee meeting itself, I felt the key points I presented were listened to, and that the contribution of Bowel Cancer UK was valued by committee members. The subsequent advice published by SHTG stated that robot-assisted surgery should be considered for some patients with rectal cancer who fit the agreed criteria. In those patients, there is evidence of a clinical benefit as it reduces the risks that come with open surgery.

We’re proud to know that we play a crucial role in shaping the final advice that will influence health policy and decision-making at local and national level that will promote an efficient, safe, sustainable, equitable and high-quality health system for all patients, not just those with bowel cancer.

In addition to the robotic surgery assessment, I’ve also provided peer review comments for two other assessments on behalf of Bowel Cancer UK. The first was to explore the introduction of the use of Colon Capsule Endoscopy for detecting bowel cancer or polyps, and found that this kind of technology may be considered as an option for some patients. The second was the use of PET-CT imaging in patients with anal cancer, which found that such imaging should be considered when assessing the stage of tumours.

We’re proud to know that we play a crucial role in shaping the final advice that will influence health policy and decision-making at local and national level that will promote an efficient, safe, sustainable, equitable and high-quality health system for all patients, not just those with bowel cancer. Working with SHTG to develop evidence and advice like this will help Bowel Cancer UK achieve our vision of a future where nobody dies from the disease.

Claire Donaghy is Head of Scotland for Bowel Cancer UK.

More information

Visit our website for more information on the work of the Scottish Health Technologies Group.

Many parts one purpose (on pattern)-09

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