Comments

1. 

   Laura Elliott 28 Mar 2023

   This is an excellent proposal that would clearly benefit a large number of patients and help them better manage, independently at home, rather than attend a&e, which can be highly distressing for these patients.
   This project tailors the needs to the the local community to Kings in Lambeth and Southwark, which as you’ve identified, has a large proportion of people with poor health literacy.

2. 

   Lesley Williamson 9 Mar 2023

   Knowledge is power. If we have the knowledge to help reduce breathlessness and increase well-being, so why not share this knowledge in a meaningful way with more people who need it? We all know there are health inequalities and that they are worsening. We know this because there is a repeated rhetoric of describing them or calling for their reduction. This project offers a clear opportunity to actually do something to make a change and finally put words into action. So many people will have the potential to benefit from this project and live more comfortably. In the UK and beyond. In this day and age, it shouldn't be a question of if, it should be a question of how - and this project answers that question.

3. 

   Rain Newel-Lewis 9 Mar 2023

   I never relied so heavily on our amazing NHS as when I developed severe antenatal anxiety. That was years ago and I still use the techniques I was taught at that time to manage breathlessness. Experiencing breathlessness can feel like the floor is disappearing beneath you, being educated in self management techniques is empowering. This project will help ensure such education is accessible to everyone regardless of the discrimination they face in the broader community. This is a very desirable use of NHS resources - building on and further developing resources to significantly increase their efficacy and impact. This is such a fantastic and well conceived project.

4. 

   Leena Srivastava 8 Mar 2023

   This will be a great project addressing a very important symptom. It will help address inequalities in accessing services and answer some questions which will help us plan our services better

5. 

   Karon Ornadel 7 Mar 2023

   As we all recognise, the Covid pandemic illuminated the health inequities in people from minoritised ethnic groups in Britain. It is imperative that we dismantle barriers for patients to access excellent symptom control. Breathlessness is one of the most distressing symptoms that patients and their families experience. Distress can often be mitigated when simple interventions, such as breathing techniques, are understood by patients and their families, who can then regain an element of control of the situation. This project, run by a highly esteemed and prolific team, will increase equity of access to knowledge about breathlessness management. Adapting and providing breathlessness support services resources for those from minoritised ethnic backgrounds will enable a minimal cost intervention that can be utilised by patients and their families, decreasing their distress and the need to be admitted to hospital or hospice. The resources will be made widely available enabling clinicians across Britain, not just a local area, to make their patients’ care more equitable. I look forward to the delivery of this project and the impact on our patients from diverse ethnic backgrounds.

6. 

   Regina Craig 7 Mar 2023

   Understanding breathlessness and management of this is fundamental in the quality of our patients life's.  This project is a fantastic way to reach and empower our patients that have limited access to such support.

7. 

   Clare Ellis-Smith 7 Mar 2023

   This is such important work to improve the lives of those living with one of the most distressing and frightening symptoms. It is essential that we reduce inequalities by making these excellent and evidence-based resources available to those who do not have access to them. This project will provide a real and immediate benefit to patients and their families from under-served populations, and by being freely and widely available in multiple formats, will further reduce inequalities.

8. 

   Liam Gabb 7 Mar 2023

   This sounds like a great project! From my clinical practice self-directed multi-media resources are really useful in empowering people to manage their breathlessness and widening access to people throughout the population we cover at King's (and beyond) will be hugely beneficial.

9. 

   Wendy Prentice 7 Mar 2023

   Great idea, very relevant to local population.

10. 

    Lisa Brighton 6 Mar 2023

    Really exciting to see a proposal that will improve access to tools we know are supported by a rigorous evidence base, and will help support people with a symptom that is highly distressing for patients and families. The team involved have a track-record of high quality work in this area, and are well-equipped to ensure the project has maximum reach and impact.

11. 

    Richard Harding 6 Mar 2023

    Great to see that this focuses on both QUALITY and ACCESS- it is crucial to approach widening access with a lens of quality- not just more access, but access to high quality services that are individualised to need. The real benefit is for both patients and families, as the anxiety among family members can drive unplanned hospital admissions.

12. 

    Charoula Karpathiotaki 6 Mar 2023

    Breathlessness is one of the symptoms we see very often in our group of patients. It can be very distressing and often makes people come to hospital seeking help, preventing them from being at home with their loved ones.

    Due to the location of our hospital in an area with 50% of residents being non- White we often care for people where English is not the first language.  We need to ensure we have the resources available, which will allow us to offer equitable care.

     

     

13. 

    Charoula Karpathiotaki 6 Mar 2023

    Breathlessness is one of the symptoms we see very often in our group of patients. It can be very distressing and often makes people come to hospital seeking help, preventing them from being at home with their loved ones.

    Due to the location of our hospital in an area with 50% of residents being non- White we often care for people where English is not the first language.  We need to ensure we have the resources available, which will allow us to offer equitable care.

     

    local population as they are all in English and require high levels of health literacy. We urgently need to develop resources that meet the needs of these groups. By providing easy-to-understand resources in accessible formats that patients can relate to, ethnically diverse patients can have equitable access to breathlessness support resources. This will reduce health inequality, improve health literacy and reduce hospital admissions.

14. 

    Catriona Mayland 6 Mar 2023

    Shortness of breath is a distressing symptom, which often results in hospital admission. Looking proactively to reduce barriers when accessing services is so important to reduce inequities and enhance inclusiveness. This project looks to address this and is very worthwhile to support.

15. 

    Emily Lam 6 Mar 2023

    A great idea and much needed support for people who suffer from the frightening and distressing symptoms of breathlessness.

16. 

    Matthew Maddocks 6 Mar 2023

    A proposal with lots of potential for benefit. I am interested in how the languages will be chosen / prioritized and how communities will become aware of and share resources. Working through these issues with a focused project like this can provide useful learning for others wanting to share written resources for other health and social care topics.

    1. 

       Sabrina Bajwah 9 Mar 2023

       Thanks, Matt. Your comment has made me reflect and consider which languages we will choose. We have another project coming online where we will examine the ethnicity and language of those admitted to King's College Hospital with breathlessness. I think it would be best to use this information to inform what languages we develop. We will also work closely with our patient, public and community groups to consider distribution and dissemination of the resources.

17. 

    Cristi Sheridan-Hicks 6 Mar 2023

    What an amazing project. Working as a palliative care nurse in SE London I can really see how this project could make such a positive impact.

    I have met so many patients who tell me they would have preferred to stay at home with their loved ones but their breathlessness was unbearable. Lots of these patients go on to die in hospital, despite expressing a wish to die at home. Having equitable access to easy to understand resources could have such a positive impact on this group and their loved ones.

    I think the plan to have the resources available freely on YouTube is brilliant. I also love that the resources will be made available to the wider community, not just our local area.

18. 

    Helen Stephens 6 Mar 2023

    Breathlessness is one of the most distressing and difficult symptoms to manage with associated anxiety contributing significantly to symptom. Promoting multi media resources in other languages and literacy levels to support patients, families and professionals  is a vital step in  addressing inequalities in care.

19. 

    Janna Nagy 6 Mar 2023

    As a palliative care nurse working in Kings College Hospital I see and care for many patients who suffer from breathlessness and is a frightening condition for patients and their loved ones. Great to see some fantastic work being done for those who need it most.

20. 

    Catherine Evans 4 Mar 2023

    This a vital study to improve experiences of care and outcomes for people affected by breathlessness from racialised/ethnic groups. These groups' care is too often sub-optimal because care is poorly aligned with understanding and opportunities of how to maximise the person's ability to manage their distressing symptom of breathlessness. This poor alignment because of limited evidence and understanding means suffering is not relieved. This study is vital to reduce suffering for this population.

21. 

    Andy Bradshaw 4 Mar 2023

    This is a rigorously planned project on an important and timely topic within palliative and end-of-life care. Alongside adding to conversations that are starting to take place within the field regarding health inequities at the end of life and how these intersect across different identities, it has direct clinical and practical value in enhancing access to culturally appropriate breathlessness services and resources for people from ethnically diverse groups. In particular, this project should be commended in its approach. Too often research is conducted on and to people from under served groups, whereas this project is committed to working collaboratively with people in the co-creation of breathlessness support resources. At £40,000, for a years work, this project represents very good value for money.

22. 

    Zoebia Islam 3 Mar 2023

    I have lived experience of  seeing a relative  suffer with the frightening symptoms of Breathlessness and it is horrific.  There is a real lack of  information available  in accessible formats for ethically diverse communities which confounds the ability to access appropriate  healthcare. This project is a step toward addressing  inequalities and inequity and will ultimately empower patients to relieve suffering and support self management.

23. 

    Dr Gemma Clarke 3 Mar 2023

    This is such an important project, healthcare services need to be designed to fit the population they are serving, and should be accessible to all.  Otherwise inequalities can increase, as those with the greatest needs may not be able to get access.  Breathlessness is a distressing and debilitating symptom which requires greater attention and tailored appropriate resources. I commend the fact that this project is bringing together a diverse panel of people from community and faith organisations to support the co-production and implementation, and has a strong multi-media dissemination strategy. A very timely well-designed project with a strong team.

    1. 

       Sabrina Bajwah 6 Mar 2023

       Thanks, Gemma. For the last 7 years, our breathlessness support service resources have only been available in English. It really opened my eyes seeing the latest census results, and the increasing diversity of our local population in South London and nationally. It is time that we met the needs of these groups too.

24. 

    Sara Al-Hashimi 3 Mar 2023

    This is a fantastic project idea. Having worked in South East London I know how useful these resources would be for the population. Health inequalities in minority ethnic groups is a well known fact, particularly around engagement with palliative care services. I really like that this project can help to address these inequities to better meet the communities needs.

25. 

    Sian Best 3 Mar 2023

    This project highlights the value of communication in healthcare and the importance of connecting directly with patients to improve care. Effective communication between patients and the people who provide their healthcare influences the health outcomes of those patients.  Dismantling communication barriers between patients and healthcare professionals changes relationships and empowers patients to become active participants in their care. This project is highly translatable into management of other long term conditions and has the potential to have a wide impact outside management of breathlessness.

26. 

    Kate Heaps 3 Mar 2023

    As a hospice Chief Executive I know how many people under our care experience breathlessness and how debilitating and scary it can be. The community we serve is a ethnically and socio-economically diverse community and we need resources that are tailored to support people from different backgrounds to promote dignity and independence and help them achieve the best quality of life they can.

    As the SE London ICB Clinical Lead, I am proud of the focus that we have on challenging inequalities and ensuring people from the global community get the standard of healthcare they should be able to expect, this project will inevitably be much further reaching than SE London in the long term due to the expertise and credibility of the Team and the opportunities for spread and scale that they have.

27. 

    Adejoke Oluyase 3 Mar 2023

    As a person from a Black African background, I do appreciate the fact that Dr Sabrina Bajwah is addressing this area of need. Breathlessness is a key symptom in many advanced diseases. This project is very timely as it will improve access to useful breathlessness resources, thereby empowering and leading to better outcomes for people from ethnically diverse groups.

28. 

    Ruth Chambers 3 Mar 2023

    Breathlessness is frightening. Anyone who cannot speak for themselves, for whatever reason, and has no one to support them is particularly disadvantaged. This seems like an important and inclusive project and should help to address health inequalities.

29. 

    Adedamola Bello 3 Mar 2023

    This is a great project.

    Looking forward to hearing about the outcomes.

30. 

    Emma Hodges 3 Mar 2023

    I love the fact that this project is seeking to bring together diverse panel of people, community leaders, citizens and anyone who might be able to support the co-production and implementation of these vital resources.   Too often services are designed to suit the system rather than in a truly consultative way that enables power sharing with citizens.  Policy talks about 'self management' or 'self care' but doesn't often create solutions with citizens that are meaningful and accessible to them.  This is a great project and I wish those involved the very best of luck.

31. 

    Joanna Davies 3 Mar 2023

    Great to see this essential and timely work to address known socioeconomic and ethnic inequalities in access to care for people with chronic breathlessness. We know that the prevalence of breathlessness, and avoidable hospital admissions caused by breathlessness, are socially and ethnically patterned. We also know that without proper attention on ensuring that services and interventions are accessible in an equitable way, then it is often patients with the highest needs that tend to miss out and as a result inequalities can actually increase. This highly practical project will directly address this ensuring more equitable access to breathlessness support services and materials. The wide dissemination and promotion of the work should also help to set a standard for the development of more equitably accessible interventions and materials across health and social care.

    1. 

       Sabrina Bajwah 6 Mar 2023

       Thanks, Joanna. I totally agree with you that when we develop interventions that do not consider all the population that they are intended for, we can inadvertently increase inequality. We hope that through this work, we will raise awareness of these vulnerable groups. We also hope that this will be a  stepping stone to all services within the NHS and wider healthcare adopting this approach.

32. 

    Mevhibe Banu Hocaoglu 3 Mar 2023

    I am an early career researcher in palliative and end of life care, specializing in measurement of symptoms and concerns most important for the patients.  Breathlessness is a key symptom that underlies so many conditions, such as COPD as well asthma, and COVID. It is one of the key symptoms that has a impact on the quality of life of individuals living with it.  In our work with severe COVID patients, breathless was identified as a key symptom that could act as a trigger for early referral.    Accessible resources on self-management not only reducing admissions to A&E, but most importantly  will empower patients, and increase the confidence of their families and carers in the management of this very distressing symptom.

33. 

    Alysha McIntosh 3 Mar 2023

    I think the importance of this project work cannot be understated and I am so glad to see this project proposal address a real gap. As a staff nurse working on a respiratory high dependency unit, I absolutely often noticed disparities between patients from non-White backgrounds vs. patients from White British backgrounds, in their ability to receive meaningful engagement from various respiratory therapies, particularly if there was a language barrier, alternative preferred cultural practices, or institutional mistrust/fear. As the nurse responsible for managing this at the bedside however, I often felt powerless or unsure of how to address this. Had I had access to inclusive multi-media on YouTube that I could have helped my patients and their loved ones to watch in their preferred languages, I feel like this would have made a world of difference in these situations as communication and understanding is so vital in helping patients manage their breathlessness.

34. 

    Katherine Bristowe 3 Mar 2023

    South London is wonderfully diverse, however too often individuals from minoritised communities are not able to access interventions that may improve their health and quality of life. Initiatives like this are vital. Without translation and cultural adaption we risk further inequities.

35. 

    Laura-Jane Smith 3 Mar 2023

    As a Respiratory physician I see the devastating impact of breathlessness all the time. It’s such a frightening symptom, which leads people to present to emergency services. Hospitals feel like places of safety but the approach to breathlessness can further compound anxiety around the symptom. The impact of knowledge and empowerment can be transformative. As clinicians we are crying out for more diverse resources. For example I use physiotherapyforbpd videos a lot and really appreciate the fact they are freely available,mm but the participants are all white and the way of framing symptoms may or may not suit all patients. I would certainly use the resources proposed in this project myself, and really hope this project is funded.

    1. 

       Dr Sabrina Bajwah 3 Mar 2023

       Thanks Laura-Jane. I know when I talk to people in my Pakistani community, the main reasons they don't access resources are 1)language 2)no-one looks like them and so they find the resources hard to relate to. By developing resources that reflect these patients, I think we can improve engagement.

36. 

    Katherine Sleeman 2 Mar 2023

    Emergency hospitalisation near the end of life is more common among people from minoritised ethnic groups. Having resources like this translated in many languages may help people from these communities stay at home as they approach the end of life (if that is their preference). It's an important project.

37. 

    David Chandler 2 Mar 2023

    Having seen panic attacks, attacks linked to asthma, breathlessness and anxiety we need much better joined up care in primary,community and secondary care. Realistically, patients should be treated out of hospital for these conditions, but are often admitted and end up becoming worse.  One cannot blame paramedics for taking patients to hospital when care at home is non-existent, so more involvement from the GP and community health staff to keep patients out of hospital.

    Also seen too many pallative care cancer  patients end up in hospital when there wish to die is at home surrounded by family, as we also don't do death very well in the UK. Society and medical professionals need to work together to grant the wishes for these patients, rather than admit them to hospital as they become forgotten.  If the model is not working, one needs to change by putting patients first and involving patients and public in changing models not out of lip service but to drive real change to level up care in the UK

38. 

    Colleen Ewart (Patient Public Involvement) 2 Mar 2023

    Many of my family worked in the coal mining industry so I grew up with relatives wheezing, coughing and breathless! It was distressing but the 'norm' back in the 60s, 70s and 80s. This is one of the most harrowing conditions to cope with. Watching someone struggle to get their breathe is frightening  but to be that person straining to get enough oxygen is frankly terrifying. This innovative project is long overdue but timely to help provide crucial resources/ information for patients/carer's post COVID. I worked for a department in the Civil Service in another life. In the late 90s early 2000s all our information/leaflets  were produced in as many  languages as possible to serve our diverse communities. We had staff that could provide interrupting or paid for external interpreters. Where did it all go so wrong??? We must do better to reduce inequality and provide support for ALL !!!

39. 

    Sabrina Bajwah 2 Mar 2023

    Thanks, Jonathan. I think you are completely right- we risk increasing inequality by developing services that don't meet the needs of these patients. We need to actively address this. Hopefully, this will be a springboard for all of us to think about those underserved communities more when we are developing services and interventions.

40. 

    Alan Quarterman BA (Hons) 2 Mar 2023

    Some great research. We need to tackle these problems.

    1. 

       Sabrina Bajwah 2 Mar 2023

       Thanks, Alan. I think we have had inaction for too long. It's time to make resources equitable.

41. 

    Professor Jonathan Koffman 2 Mar 2023

    The United Kingdom is increasingly diverse yet the manner in which services are designed, or  provided, for people from minoritised communities is often completely out of step with their needs. This is not just. It also leads to worse health experiences and outcomes of care - bad for patients, bad for their families and bad for the NHS who then have to manage distressing symptoms during crises. This innovative project is designed to progress care for a poorly managed symptom (breathlessness)  leading to  a path to patient benefit. The team demonstrable considerable skills and expertise in this field of enquiry.

42. 

    Smarajit Roy 2 Mar 2023

    I am an Asian-aged person who has many friends from diverse communities. My interest has always been in the Health and Well being of the communities that I live in.  I am aware of a large number that suffers from breathlessness. Most of them do not think this is an illness. There is nothing that signposts them where to get help and information. Most of them feel embarrassed to visit their GPs or Hospitals and suffer unnecessarily. These can significantly affect the physical, mental, and emotional domains of health-related quality of life.

    1. 

       Sabrina Bajwah 2 Mar 2023

       Thanks, Smarajit. I am a British Pakistani and I also see in my community that people do not engage with services because resources do not meet their needs. To get our communities to engage and have improved outcomes, we need to do better in healthcare.

43. 

    Emel Yorganci 2 Mar 2023

    I think this is a brilliant project. As a non-English person with relatives who live in London, I know first-hand how much some of them struggle to understand English information leaflets about their health and even don't bother looking at them. Breathless is a scary symptom for many and it is important to equip everyone, not just English speakers, with essential knowledge. This is a major step forward in providing equitable access to healthcare and improving health literacy. I also love that this information will be available in multi-media formats and smart phones. This is make it much easier for people to access the information whenever they need it. Keeping paper leaflets at hand is unrealistic for many. I also feel that on a different level, this will mean a lot to the patients and their families and improve their relationships and perceptions of healthcare in England.

    1. 

       Dr Sabrina Bajwah 2 Mar 2023

       Thanks, Emel.  I too have experience of trying to access appropriate resources for non-English speaking relatives, and failing. Your points are incredibly insightful and I think you are right- if we can show we care through developing these resources, perhaps we can improve perceptions of healthcare and relationships between health professionals and these underserved patients.

44. 

    Dr Catherine Pestano 2 Mar 2023

    I think this is a good project worthy of support. The type of resources should be very helpful in attracting and opening up engagement. It is friendly and accessible. Personally I am a fan of breath ans voice resources for supporting people from diverse communities with breathlessness as the evidence base is growing and I hope this will be incorporated.

    Please support the project

45. 

    Margaret Boyle 2 Mar 2023

    Breathlessness is a very frightening symptom to have and to live with and can induce feelings of helplessness and/or despair. This impacts not only on the person who suffers from it but those closest to them. This can cause anxiety and depression. For someone who cannot access information around how to cope with their breathlessness because information and resources are not in a language or format they can understand hugely impacts their quality of live in a negative way.This initiative would augment everyone affected would have the information and service they deserve.

    1. 

       Sabrina Bajwah 3 Mar 2023

       Thanks, Margaret. You are right that the impact of uncontrolled breathlessness is far reaching. Family members often want to help and hopefully these resources will allow this. Many of these patients live in multi-generational households and so involving family members is key.

46. 

    Leanne Boyle 2 Mar 2023

    I have worked in palliative care for nearly 20 years and one of the most distressing and difficult to control symptoms to manage is breathlessness and the associated anxiety this causes to patients and their carers.  It is common for everyone involved to feel frightened and out of control.  If supporting multimedia information as well as professional interactions are not in a language or format you can understand it puts you in a very isolating and unfair situation.   This will negatively impact  your quality of life, ability to cope and health outcomes.  I welcome this project and look forward to seeing the results in practice.

47. 

    Richard Towers 2 Mar 2023

    Breathing difficulties are one the most distressing symptoms we encounter in palliative care. Sharing information is crucial to help patients, relieve suffering and support self management. This has the potential to contribute to enabling people to remain in their chosen place of care and avoid unnecessary and unwanted hospital admission. We have seen the difference that making information accessible to wider populations can make and this initiative would contribute to making sure everyone has the information and help they need.

48. 

    Helen McGee 2 Mar 2023

    As a Consultant in Palliative Medicine, I see a lot of patients struggling to manage breathlessness both at home & in hospital. Having information & resources available in languages other than English and multi-media resources would be a great help for these patients and for the professionals who are trying to help them manage their chronic breathlessness.

    I am particularly impressed with the idea of making the resources available more widely- we spend so much of our time within the NHS re-writing or re-inventing good work that has been done elsewhere when it would be so much more beneficial to share this.

49. 

    Connie JacksonHaving worked in the south E 2 Mar 2023

    Having worked as a CNS in both lung cancer and palliative care in South East London I have seen first hand the impact of health inequalities, having literature available in other languages is great but as the project points out there are high levels of poor literacy so having multimedia resources sounds like a great way forward. I also love the idea of making resources  more widely available so that the benefit is wide reaching

50. 

    Biba Stanton 1 Mar 2023

    I love the fact that the resources you create will be freely available beyond our local trust.  Some of the patients I am seeing in our long COVID service would definitely benefit from this

    1. 

       Sabrina Bajwah 1 Mar 2023

       Thanks, Biba. It is really important to us that these resources are freely available. Many of the patients in the groups we are targeted are socio-economically deprived and we need to ensure we meet their needs.

51. 

    John Lodge 1 Mar 2023

    I have a few contacts who could develop the multimedia work you need to deliver this project. Let me know if you want me to put you in touch with them. I've used them before for NHS work and I know they could help you do this within your budget proposal

52. 

    Rebecca Tulk 1 Mar 2023

    I like the potential for reducing inequality and improving access to services on this idea

    1. 

       Cheryl Levy 1 Mar 2023

       Agreed Rebecca.  Definitely a great project which will have an amazing impact on our diverse community.

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