One of the clear findings of the sickle cell care inquiry conducted by the Sickle Cell Society and the APPG on Sickle Cell and Thalassaemia, as detailed in the ‘No One’s Listening’ report, was that inadequate staffing levels for sickle cell care are a key factor in the care failings sickle cell patients encounter. The inquiry was told of “chronic under-staffing”, with fears that the problem is on course to get worse without action, due to an ageing staff demographic and too few replacements.

The report also detailed evidence that the lack of specialist nurses for sickle cell care means that patients encounter healthcare professionals without the appropriate knowledge of their condition, which exacerbates issues around stigmatisation, lack of joined-up care and care failings.

The Sickle Cell Society is now undertaking a research project to gain a more detailed understanding of the current level of nurse staffing for sickle cell (and other rare anaemias), the impact this has on patients and clinicians, and what needs to happen to ensure there are sufficient numbers of nurses to deliver a good standard of care to people with sickle cell disorder.

What the research project aims to explore:

The Sickle Cell Society would welcome evidence from a range of individuals and organisations, such as individuals with sickle cell disorder, family members and carers of people with sickle cell disorder, healthcare professionals, healthcare bodies and other relevant organisations. We have suggested below questions that may be most relevant to different respondents but please feel free to answer any questions you wish to respond to:

For patients and carers

• In your experience, is there generally a sufficient number of nurses to provide a good standard of sickle cell care?
• In your experience, is there a sufficient number of nurses who specialise in sickle cell?
• In your experience, how does the level of nurse staffing in the community compare with in-patient hospital settings?
• What is your impression of how the level of specialist nurse staffing for sickle cell compares with other conditions such as cystic fibrosis and haemophilia?
• What impact does the current level of nurse staffing have on your (or your loved one’s) care?
• What is your impression of the impact the current level of nurse staffing has on the nurses who deliver your (or your loved one’s) care?
• What do you (or your loved one) require from the nurses who care for you? What does good care and support look like?

For nurses and other healthcare professionals

• In your experience, is there generally a sufficient number of nurses to provide a good standard of sickle cell care?
• In your experience, is there a sufficient number of nurses who specialise in sickle cell?
• What factors affect how many nurses choose to specialise in sickle cell?
• To provide a good standard of care, what would you say the ratio should be of number of sickle cell patients per specialist nurse employed? What is the current ratio in your service?
• How does the level of nurse staffing in the community compare with in-patient settings?
• What is your assessment of the level of availability of nurse counselling for sickle cell patients?
• How does the level of nurse staffing for sickle cell compare with other conditions such as cystic fibrosis and haemophilia?
• How has the level of nurse staffing changed during the time you have been working? Is it better, the same or worse? What are the reasons for this? What impact did the pandemic have?
• What impact does the current level of nurse staffing have on you and your colleagues?
• What impact does the current level of nurse staffing have on sickle cell patients?
• If you believe the current level of nurse staffing for sickle cell is insufficient, what do you believe needs to happen to increase numbers? Are there steps other than increasing funding that need to be taken?
• What needs to happen to increase retention of the sickle cell nursing workforce?
• What is your expectation of what will happen to sickle cell nursing workforce levels in the coming years without a change of approach?
• Is regular training on sickle cell provided to nurses in your NHS Trust who are not specialists in sickle cell? If so, can you describe this training and its frequency?
• What does or what would a good training pathway to develop specialist sickle cell nurses look like?
• [If you work in the community] To what extent do you feel you have appropriate coordination with colleagues in secondary care?
• [If you work in secondary care] To what extent do you feel you have appropriate coordination with colleagues in community settings?

For healthcare bodies

• Is there generally a sufficient number of nurses to provide a good standard of sickle cell care in England?
• Is there a sufficient number of nurses who specialise in sickle cell?
• What factors affect how many nurses choose to specialise in sickle cell?
• Are there challenges in filling sickle cell nurse vacancies? If so, why is this?
• To provide a good standard of care, what should the ratio be of number of sickle cell patients per specialist nurse employed?
• How does the level of nurse staffing in the community compare with in-patient settings?
• What is your assessment of the level of availability of nurse counselling for sickle cell patients?
• How does the level of nurse staffing for sickle cell compare with other conditions such as cystic fibrosis and haemophilia?
• What impact has the pandemic had on the sickle cell nurse workforce?
• What impact does the current level of nurse staffing have on nurses and other clinicians?
• What impact does the current level of nurse staffing have on sickle cell patients?
• If you believe the current level of nurse staffing for sickle cell is insufficient, what do you believe needs to happen to increase numbers? Are there steps other than increasing funding that need to be taken?
• What needs to happen to increase retention of the sickle cell nursing workforce?
• What is your expectation of what will happen to sickle cell nursing workforce levels in the coming years without a change of approach?

The Sickle Cell Society will consider the evidence presented to it and present its recommendations in a report to be published in late 2023.

Submission guidelines:

Submissions of written evidence should follow the guidelines below:

• Be submitted as a Microsoft Word document
• State clearly who the submission is from, and whether it is sent in a personal capacity or on behalf of an organisation
• Be no more than 2,500 words in length
• Comprise a single document attachment to the email.

There is no requirement to answer every question above and respondents should feel free to choose the questions they can most usefully cover. Accounts of personal experience and anecdotal evidence is welcome. The Sickle Cell Society would welcome receiving submissions from individuals or organisations.

Written evidence received will form the basis for the Sickle Cell Society’s final report, alongside evidence gathered through focus groups and interviews. Some written evidence will be directly quoted in the report. Please explicitly state if any of the submission provided should not be directly quoted or should only be quoted anonymously.

Please submit written evidence to aidan.rylatt@sicklecellsociety.org by Friday 5^th May 2023.

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The report revealed many heartbreaking realities faced by Sickle Cell and Thalassemia patients. The findings of the report highlighted a generally low awareness of Sickle Cell among healthcare professionals across the UK. This led to extremely traumatic experiences in hospitals where Sickle Cell patients in excruciating pain were left to wait for hours, were often deeply misunderstood, or simply did not receive the timely and effective treatment for their condition.

Basic understanding of the condition covers an awareness of the need to keep Sickle Cell patients well hydrated, warm and providing the administration of effective pain relief within 30 minutes in accordance with NICE guidelines. They then require timely check-ups as they stabalise after a pain crisis.

As the fastest growing genetic blood condition in the UK, Sickle Cell affects approximately 15,000 people in the UK. The condition changes the shape of red blood cells leading to debilitating crises which cause sufferers extreme pain throughout the body. Sickle Cell can also have a severe impact on joints, kidneys and patients are at high risk of stroke and other health complications.

Sickle Cell affects every single aspect of a person’s life from their ability to participate normally in work and education as well as having an impact on mental and emotional health predominately from dealing with sustained levels of pain and extreme fatigue.

The report explicitly highlighted that the troubling health care inequalities faced by Sickle Cell patients were unavoidably linked to racism as the condition predominantly affects those from African and Caribbean backgrounds. The report references the negative attitudes and stereotypes that Sickle Cell patients face when visiting hospital.

The report called for nationwide improvements in Sickle Cell care across the country. The strength of the report was triggered by the tragic and avoidable death of Evan Smith who sadly passed away after calling 999 from his hospital bed. The investigation into his death highlighted a lack of understanding of his Sickle Cell as a contributing factor to his death. Devastatingly, there have been other Sickle Cell deaths since Evan’s passing due to similar reasons.

Since the launch of the report in November 2021, a Westminster Hall debate on Sickle Cell took place, alongside a commitment from the then Secretary of State, Sajid Javid MP, that there would be a government national action plan to address the healthcare inequalities faced by those with Sickle Cell and other red cell disorders.

In the year since the report, the NHS Royal Health Observatory have begun a research piece on Sickle Cell, with a focus on race. The NHS have also launched the ‘Can You Tell It’s Sickle Cell’ campaign to raise awareness of the condition amongst the public and healthcare professionals, alongside a commitment to review the Sickle Cell healthcare pathway.

However, until all Sickle Cell patients have their trust restored in the healthcare system and can feel confident that they will be treated with empathy and the requisite knowledge of their condition – there remains work to be done.

On the anniversary of the report, the Sickle Cell Society, the Sickle Cell and Thalassemia APPG alongside the many voices of Sickle Cell patients, their families and carers, national charities and campaign groups cannot emphasise enough the lifesaving importance of a Sickle Cell healthcare review in the UK. This is to ensure that avoidable deaths of Sickle Cell patients and harrowing traumatic hospitalisations are no longer the norm for this section of our society.

Janet Daby MP, Chair off the Sickle Cell & Thalassemia APPG, said “For too long people with Sickle Cell have been let down when they are at their most vulnerable.

As Chair of the APPG, it is my ambition to ensure all the recommendations from this report are implemented in full. If this happens patient experiences in healthcare settings will improve dramatically.

It is time for Sickle Cell to be taken seriously.”

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On 15th November 2021, we published a report following our inquiry into the avoidable deaths and failures of care for sickle cell patients in secondary care.

Join us to hear from Seyi Afolabi, our Parliamentary & Policy officer for Sickle Cell and Thalassaemia All Party Parliamentary Group, who will be presenting all you need to know about our inquiry and how you can support, with an open opportunity for questions.

Register to join via zoom at https://bit.ly/nooneslisteningreport

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We were delighted that  Rt Hon Pat McFadden MP (Chair of the All-Party Parliamentary Group for Sickle Cell and Thalassaemia) was able to secure a Westminster Hall Debate to discuss the treatment of sickle cell following our recent inquiry report ‘No One’s Listening’.

The debate took place on 8th December 2:30pm at Westminster Hall.

You can watch the full debate here:

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Report published today (15th November 2021) following inquiry into avoidable deaths and failures of care for sickle cell patients.

An All-Party Parliamentary Group (APPG) inquiry report published today highlights shocking failures as cross-party MPs call for major changes into care for sickle cell patients.

The groundbreaking inquiry, led by Rt Hon Pat McFadden MP, Chair of the APPG on Sickle Cell and Thalassaemia, has found “serious care failings” in acute services and evidence of attitudes underpinned by racism.

Click the image to download the report

The ‘No One’s Listening’ report, which is based on the inquiry’s findings, is jointly published by the APPG on Sickle Cell and Thalassaemia and the Sickle Cell Society, a national charity that supports and represents people affected by sickle cell disorders.

Download the full report here: No One’s Listening – A Report (PDF)

Support the report by writing to your MP here: www.sicklecellsociety.org/resource/write-to-your-mp/

Key findings from the inquiry include:

• evidence of sub-standard care for sickle cell patients admitted to general wards or attending Accident & Emergency (A&E) departments (including a widespread lack of adherence to national care standards)
• low awareness of sickle cell among healthcare professionals and clear examples of inadequate training and insufficient investment in sickle cell care
• frequent reports of negative attitudes towards sickle cell patients and a weight of the evidence suggests that such attitudes are often underpinned by racism

The inquiry also found that these concerns have led to a fear and avoidance of hospitals for many people living with sickle cell. 

While the inquiry did find that specialist haemoglobinopathy services are generally felt to be of a good standard, the report shows that this is far from the case on general wards or A&E departments. Care failings have led to patient deaths and ‘near misses’ are not uncommon. The inquiry heard that awareness of sickle cell among healthcare professionals is low, with sickle cell patients regularly having to educate healthcare professionals about the basics of their condition at times of significant pain and distress and that there is routine failure to comply with national care standards around pain relief when patients attend A&E. 

Among the most notable of cases reviewed by the APPG was the tragic death of sickle cell patient Evan Nathan Smith in North Middlesex University Hospital in April 2019, which received renewed focus following the publication of the coroner’s inquest in April 2021. The inquest found that Evan’s death would not have happened were it not for failures in the care he received. The report highlights that high-profile cases of failings like these are sadly not isolated incidents and sickle cell patients all too often receive sub-standard care.

Worrying evidence of deep racial inequality in the healthcare system was found as part of the inquiry process. Sickle cell is a condition that predominantly affects people with African or Caribbean heritage and patients often reported being treated with disrespect, not being believed or listened to, and not being treated as a priority by healthcare professionals even during cases where urgent medical care was needed. Some patients shared examples of particularly overt racism. One patient said he has “had to deal with doctors and nurses openly being racist towards me and others … I’ve been called the ‘n’ word to my face and much worse”. 

The report includes a number of recommendations and the APPG is calling on the Secretary of State for Health and Social Care, NHS England and NHS Improvement to prioritise taking urgent action.

Rt Hon Pat McFadden, Labour MP for Wolverhampton South East and Chair of the APPG for Sickle Cell and Thalassaemia, said:

Rt Hon Pat McFadden

“This is the most comprehensive report on sickle cell care that our All-Party Group has ever published. It has shown us that whilst people living with sickle cell generally had high levels of confidence in specialist haematology departments, there was a big gulf between this and the experience of A&E departments and generalist wards. 

One of the key findings in the report was the lack of communication between these two areas when treating people with sickle cell, this, along with tragic and avoidable deaths, has caused a serious and damaging impact on the levels of trust in the health system among sickle cell patients.

In preparing this report we took extensive oral and written evidence from sickle cell patients, clinicians and others. The report calls for a comprehensive transformation in the care of people living with sickle cell. It also reflects the frustration that many of these arguments have been made for a long time without a proper response. 

I hope this report is taken seriously by the Department of Health and Social Care and by the NHS. This time, we want people to listen because the inequalities in health care highlighted in our report and the inconsistencies in treatment for people living with sickle cell have been going on for far too long.”

John James, CEO of the Sickle Cell Society, added:

John James OBE

“The APPG inquiry’s findings are appalling but will sadly not come as a surprise to many people who have found themselves in need of urgent medical help for the symptoms of sickle cell.

I’d personally like to thank everyone who has given evidence and shared their experiences as part of this inquiry and particularly acknowledge the extraordinary bravery of the parents of Evan Nathan Smith who continue to fight so hard to prevent other families suffering from the loss of a loved one in such tragic and avoidable circumstances.

This report is an urgent call to action and should be a turning point that addresses these serious failures of care and secures long overdue improvements.”

The inquiry is the first of its kind as it featured oral evidence sessions with testimony from expert witnesses including sickle cell patients, patients’ carers and family members, clinicians and representatives from relevant healthcare bodies and over 100 submissions of written evidence from key stakeholders. 

Download the full report here: No One’s Listening – A Report (PDF)

Support the report by writing to your MP here: www.sicklecellsociety.org/resource/write-to-your-mp/

Westminster Hall Debate

On Wednesday 8th December, the Rt Hon Pat McFadden MP, Chair of the All-Party Parliamentary Group for Sickle Cell and Thalassaemia (SCTAPPG), secured a Westminster Hall Debate to discuss the Treatment of Sickle Cell following this inquiry report.

The debate saw MPs discuss the findings and recommendations of the inquiry report, personal testimony from MPs with experience of family members and constituents with sickle cell, and a discussion of plans to make improvements.

Watch the full debate here:

No One’s Listening Explained (Event)

On Monday 17th January our Give Blood Spread Love project hosted a free online event ‘No One’s Listening Report’ Explained.

People from across the UK joined to hear from Seyi Afolabi, our Parliamentary & Policy officer for SCTAPPG, who presented on all you need to know about our inquiry and how you can support, followed by an open opportunity for questions.

Watch the full event here:

Notes to editors:

About the inquiry and the ‘No one’s listening’ report:

• The ‘No one’s listening’ report was triggered by the Coroner’s report into the death of Evan Nathan Smith in North Middlesex hospital. 
• Following the publication of the Coroner’s report earlier this year, the APPG held three evidence sessions, hearing from patients, clinicians and politicians. The APPG took evidence from a wide range of witnesses and received over a hundred written submissions. The report is a result of that evidence.
• The inquiry, chaired by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG) Chair Rt Hon Pat McFadden MP, featured three oral evidence sessions held in June 2021, with SCTAPPG members receiving testimony from expert witnesses including sickle cell patients, patients’ carers and family members, clinicians and representatives from relevant healthcare bodies. In addition, the SCTAPPG issued a call for written evidence which resulted in the receipt of over 100 submissions from key stakeholders.
• The report includes a number of recommendations based on the evidence received and calls on the Secretary of State for Health and Social Care, NHS England & NHS Improvement to prioritise taking action. 

About the All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG):

• The SCTAPPG was formed in December 2008 with the aim of keeping sickle cell and thalassaemia on the political agenda and facilitating a two-way dialogue between policymakers and those affected by sickle cell and thalassaemia. 
• Cross party members of the SCTAPPG are: Chair Pat McFadden (Labour), Vice Chair Janet Daby, (Labour), Dawn Butler (Labour), Baroness Benjamin (Liberal Democrat) and Bambos Charalambous (Labour). The late Sir David Amess (Conservative) was also a serving member.
• The Sickle Cell Society acts as the group’s secretariat.

About the Sickle Cell Society:

• The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.
• Email: info@sicklecellsociety.org
• Website: www.sicklecellsociety.org
• Twitter: @SickleCellUK
• Facebook: Sickle Cell Society
• Instagram: @sicklecelluk
• LinkedIn: Sickle Cell Society

About Sickle Cell Disorder:

• Sickle cell disorder is a long term inherited condition that causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage.
• People are often admitted to hospital when they have a sickle cell crisis, given strong painkillers such as morphine to control the pain, intravenous therapy and antibiotics. Some require regular blood transfusions to help reduce the number of sickle cell crises as well as prevent life-threatening problems.
• SCD is inherited from both parents; sickle cell trait is inherited from one parent.
• SCD can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
• Approximately 1 in 79 babies born in the UK carry sickle cell trait.
• Approximately 15,000 people in the UK have sickle cell disorder.
• Almost 300 babies are born in the UK with sickle cell each year.
• A simple blood test will tell whether you have sickle cell trait or the disorder.
• Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
• Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis.

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Rt Hon Pat McFadden MP (SCTAPPG Chair)
Janet Daby MP (SCTAPPG Vice Chair)

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In May we launched a call for evidence for our Inquiry into Sickle Cell Care

You are invited to come and listen to evidence for the Inquiry into Sickle Cell Care as it is presented to the Sickle Cell and Thalassaemia All-Party Parliamentary Group. Click here to register your interest.

Find more information about the inquiry below:

All-Party Parliamentary Group on Sickle Cell and Thalassaemia: Terms of reference for inquiry into sickle cell care

Introduction and background:

Recent high-profile examples of failings in care for people with sickle cell disease have led to growing awareness of the challenges sickle cell patients still too often face in receiving appropriate care. It is clear from testimony from healthcare professionals, sickle cell patients and their families over many years that these recent high-profile cases are not isolated incidents.

This inquiry by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia will examine the care sickle cell patients receive, seek to identify why care for sickle cell patients is too often sub-standard, and look to ensure that recent tragic cases lead to national change to ensure that such failings are not repeated in future.

About the inquiry:

The inquiry will be chaired by APPG on Sickle Cell and Thalassaemia Chair Pat McFadden MP, with participation from the group’s officers and other interested parliamentarians. The inquiry will take evidence on sickle cell care from patients, patients’ family members, clinicians, commissioners and other relevant stakeholders and produce a report that will make specific recommendations for action by the Department of Health and Social Care, NHS England, the Nursing and Midwifery Council and others.

In order to gather this evidence, the APPG is inviting submissions of written evidence and will hold two meetings in June 2021 to receive oral evidence, with the first taking place on Wednesday 9^th June 2021. This evidence will form the basis for the APPG’s report and recommendations.

The secretariat for the APPG on Sickle Cell and Thalassaemia is provided by the Sickle Cell Society, who will support the APPG with organising the inquiry, collating and analysis evidence and producing the final report.

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The deadline for the call for evidence has now passed. To find out more about the evidence presentation sessions click here: www.sicklecellsociety.org/evidencesessions/

Inquiry into Sickle Cell Care: A Call for Evidence

All-Party Parliamentary Group on Sickle Cell and Thalassaemia: Terms of reference for inquiry into sickle cell care

Introduction and background:

Recent high-profile examples of failings in care for people with sickle cell disease have led to growing awareness of the challenges sickle cell patients still too often face in receiving appropriate care. It is clear from testimony from healthcare professionals, sickle cell patients and their families over many years that these recent high-profile cases are not isolated incidents.

This inquiry by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia will examine the care sickle cell patients receive, seek to identify why care for sickle cell patients is too often sub-standard, and look to ensure that recent tragic cases lead to national change to ensure that such failings are not repeated in future.

About the inquiry:

The inquiry will be chaired by APPG on Sickle Cell and Thalassaemia Chair Pat McFadden MP, with participation from the group’s officers and other interested parliamentarians. The inquiry will take evidence on sickle cell care from patients, patients’ family members, clinicians, commissioners and other relevant stakeholders and produce a report that will make specific recommendations for action by the Department of Health and Social Care, NHS England, the Nursing and Midwifery Council and others.

In order to gather this evidence, the APPG is inviting submissions of written evidence and will hold two meetings in June 2021 to receive oral evidence, with the first taking place on Wednesday 9^th June 2021. This evidence will form the basis for the APPG’s report and recommendations.

The secretariat for the APPG on Sickle Cell and Thalassaemia is provided by the Sickle Cell Society, who will support the APPG with organising the inquiry, collating and analysis evidence and producing the final report.

How to get involved:

The APPG would welcome evidence from a range of individuals and organisations, such as individuals with sickle cell disease, family members of people with sickle cell disease, healthcare professionals, healthcare bodies and other relevant organisations. We have suggested below questions that may be most relevant to different respondents but please feel free to answer any questions you wish to respond to:

For patients and family members

• In your experience, to what extent is the care provided to sickle cell patients of a high standard?
• Where care for sickle cell patients does not meet a high standard, what are the reasons for this?
• In your experience, do healthcare workers have a good understanding of sickle cell disease?
• What changes should be made to improve the in-patient care provided to sickle cell patients?

For healthcare professionals

• In your experience, to what extent does the care provided to sickle cell patients meet appropriate standards of care?
• Where care for sickle cell patients does not meet an appropriate standard of care, what are the reasons for this?
• To what extent do you feel you and other colleagues receive sufficient training and education around sickle cell disease?
• What is your experience of how haematology teams and other secondary care teams work together and engage with one another? Are there any improvements that could be made to ensure better joined-up care?
• How many ‘near misses’ of a Serious Untoward Incident have you encountered in relation to sickle cell patients?

For healthcare bodies

• To what extent does your organisation believe the care provided to sickle cell patients meets appropriate standards of care?
• Where care for sickle cell patients does not meet an appropriate standard of care, what are the reasons for this?
• What training and education do you provide to your members/employees around sickle cell disease? Do you have plans to increase the level of training provided?

For researchers and research funding bodies

• What research are you undertaking or funding to develop evidence on the best approach to managing patients in sickle cell disease with acute illness?
• What improvements have been made to the care provided to sickle cell patients as a result of past research you have undertaken or funded?
• What new evidence is required on how best to treat patients with sickle cell disease using existing treatments?
• What new treatment approaches need to be developed to treat acute and chronic complications in sickle cell disease?

The APPG will consider the evidence presented to it and present its recommendations in a report to be published by August 2021.

Submission guidelines:

Submissions of written evidence should follow the guidelines below:

• Be submitted as a Microsoft Word document
• State clearly who the submission is from, and whether it is sent in a personal capacity or on behalf of an organisation
• Be no more than 2,500 words in length
• Comprise a single document attachment to the email.

There is no requirement to answer every question above and respondents should feel free to choose the questions they can most usefully cover. Accounts of personal experience and anecdotal evidence is welcome. The APPG would welcome receiving submissions from individuals or organisations.

All submissions must be about sickle cell care in the UK.

Written evidence received will form the basis for the APPG’s final report, alongside oral evidence. Some written evidence will be directly quoted in the report. Please explicitly state if any of the submission provided should not be directly quoted or should only be quoted anonymously.

 Please submit written evidence to aidan.rylatt@sicklecellsociety.org by Friday 4^th June 2021.

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The All-Party Parliamentary Group for Sickle Cell and Thalassaemia publishes a new report into the impact of the COVID-19 pandemic on the sickle cell community.

Cast Aside and Forgotten is the latest report from the Sickle Cell and Thalassaemia All-Party Parliamentary Group (SCTAPPG). Taking its name from a quote by a person living with sickle cell in the midlands, the report investigates the experiences of those living with sickle cell or caring for someone with sickle cell during the COVID-19 pandemic. 

(click image to download)

The pandemic had an unsteady start for those with sickle cell disease (an inherited blood condition which predominantly affects people from African and Caribbean backgrounds) when the NHS’s people at high risk (clinically extremely vulnerable) list included Homozygous sickle cell disease but failed to include other genotypes of sickle cell disease. After this oversight was rectified, it was then discovered through countless anecdotal accounts that those with sickle cell trait were being told erroneously they were also being classed as clinically extremely vulnerable. These two incidents failed to reassure the sickle cell community, and hence the Sickle Cell Society (SCS) knew it was crucial that more must be done by those outside central government to safeguard those living with sickle cell disease.

The SCS looked to stem this outpouring of anxiety by providing expert advice and support through the plethora of services it offers, whether that’s through its helpline which was inundated with queries, or its website providing the most up-to-date guidance.

The SCTAPPG then worked with the SCS to commission a survey into the ramifications that coronavirus would have on the sickle cell community and their primary caregivers. The survey was launched on 28th of May 2020 and disseminated through the SCS membership, as well as through patient groups and clinical networks.

Amongst a host of objectives, the survey aimed to collect data to determine whether those living with sickle cell or caring for someone with sickle cell disease are receiving all the information required, and whether the government guidance is suitable for their circumstance.

The report aims to highlight the prevailing issues that are affecting the sickle cell community during this pandemic as well as, in respondents’ own words, offering an insight into the reality of living day-to-day during the government lockdown.

It also seeks to examine this COVID-19 pandemic through the lens of the structural injustices that exist which have only served to exacerbate the plight of people living with sickle cell disease. The key findings have aided the SCTAPPG to be in a position to make a host of substantive policy recommendations in order to ensure the safety of this clinically vulnerable cohort going forward.

Download the full report here: Cast Aside and Forgotten – SCTAPPG Report (Final)

“This report paints a picture of the experience of the pandemic through the eyes of those living with sickle cell.  As in other walks of life is shows the need for more understanding of this condition as well as the need for better treatment.  I hope the report is read by those who can make a difference in health care, the benefits system and many other walks of life” – Rt Hon Pat McFadden MP (Chair of the SCTAPPG)

Key Survey Findings

50.5% of respondents informed us that the COVID-19 had affected their access to healthcare services in their locality. It is a chilling statistic that just over half of all respondents revealed that their usual health pathways were being disrupted by the pandemic.

One respondent explained that “outpatient appointments have moved to phone calls, GP appointments cancelled, I have not been able to go to chemists due to shielding, so I had to manage pain for a month while waiting for my next check-up.” 

Another said that it was “harder to get prescriptions and also getting medication delivered on time to manage my sickle cell. I have not been able to have regular blood tests to help monitor my condition.”

This failure to access healthcare services will most likely be in direct contradiction of doctors’ orders – who are best placed administer the most effective treatments and provide advice on healthcare needs. There was a general consensus that cancellation of GP service provision/outpatient appointments/annual consultations/ planned surgeries/ planned routine check-up’s/scans is a prevailing issue.

Respondents had an overwhelming sense of fear and trepidation about the future, and how these delays and missed appointments will affect their health outcomes. 

One person said: “I’m not sure how I’m going to get a new prescription for Hydroxyurea or any of my other medication. And those not fortunate enough to have support networks having to take the biggest risk of them all and fend for themselves.”

From renal to haematologist appointments, it is apparent there is distress and panic that services users are not being afforded the opportunity to effectively manage their condition by using the host of services they require. The cohort feels a sense of neglect with people lamenting that they have not had a blood test for months. Of those who hadn’t been able to access all their healthcare services, 20.5% of that cohort had reported this had itself brought on a crisis (episodes of severe pain caused when sickle cells stick together, causing blockages in the small blood vessels).

Furthermore, the nature of having to conduct appointments over the phone has resulted in cases whereby service users have felt an inability to be able communicate effectively one’s condition. One person said their “GP refused face to face appointment so I ended up in hospital with severe pneumonia because they didn’t inspect my chest.”

This has people feeling helpless to improve and manage their condition. What’s more, a reliance on support networks to carry out visits to the chemists/pharmacies puts those without those very networks at risk of failing to adhere to medical advice through no fault of their own.

Conclusion

Intrinsically COVID-19 does not discriminate, pandemics don’t choose their victims and a virus does not select its host. But what is safe to say is that in a society where structural inequalities exist whether that be by socio-economic background, race, gender, disability – COVID-19 does discriminate.

A visual representation of the qualitative evidence given on the subject of mental health reveals a very despondent and dejected cohort

The likelihood of contracting the virus increases or decreases dependent on these aforementioned variables. And though it has not been proved beyond doubt that having sickle cell decreases your chance of survival, your race and socio-economic background have been proven to increase your likelihood of contracting the virus. If you take one of our members who is BAME, has sickle cell and from a lower socio-economic background, they are more likely to suffer from COVID-19.

Consequently, COVID-19 does discriminate, it has served to exacerbate and amplify the health inequalities that already exist. 

Download the full report here: Cast Aside and Forgotten – SCTAPPG Report (Final)

Find out more about the SCTAPPG here: www.sicklecellsociety.org/sctappg/

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