Commons Sense

House of Commons · Westminster Hall

Sickle Cell Treatment — [Mrs Maria Miller in the Chair]

08 December 2021 · 10 other contributors · 13,054 words

Opened by Pat McFadden Lab Wolverhampton South East

Responding minister: Maria Caulfield

NHS

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Pat McFadden raised concerns about sickle cell treatment — [mrs maria miller in the chair] in Westminster Hall. A government minister responded.

Key points

  • Concerns raised about the tragic and avoidable death of Evan Nathan Smith due to lack of understanding of sickle cell disease among medical staff.
  • The report 'No one's listening' found unacceptable variability in treatment across different parts of the healthcare system, with poor communication between general and specialist NHS parts.
  • The government urged to improve training for staff, ensure compliance with clinical guidelines, and promote better communication between different NHS sectors.

Key requests to Government

I urge the Government to address these long-standing failures by improving training for all staff, ensuring compliance with clinical guidelines, reviewing sickle cell treatment in secondary care, and promoting better communication between different parts of the NHS. I also ask for increased research and innovation in treatments and a commitment to equality in healthcare regardless of race.

How the debate unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said.

Opened the debate

Pat McFadden Lab Wolverhampton South East

I am concerned about the tragic and avoidable death of Evan Nathan Smith, highlighting a lack of understanding of sickle cell disease among medical staff. The report 'No one's listening' found unacceptable variability in treatment across different parts of the healthcare system, with patients often having to battle for pain relief and protocols being ignored or not implemented. There is also a dangerous lack of communication between general and specialist parts of the NHS, contributing to mistakes and near misses. Patients face a lack of awareness and understanding among some staff about how to respond to sickle cell crises, leading to a loss of trust in the healthcare system.

Other contributors (10)
  • Bell Ribeiro-Addy Lab Clapham and Brixton Hill

    The APPG's report reveals substandard care, stigmatisation, and lack of prioritisation for sickle cell treatment. The MP highlights institutional racism affecting African and Caribbean heritage patients and the need to improve education and public awareness about the condition. Are the Government planning to make prescriptions free for people requiring medication for sickle cell?

  • Catherine West Lab Hornsey and Friern Barnet

    Thanked the Member for Edmonton for her work on sickle cell disease, noting that institutional attention to the issue has been insufficient. Emphasised the need for urgent redress in primary and secondary care. Asked whether there is a lack of research funding for sickle cell disease, despite its relevance to malaria and other diseases. Emphasised the under-researched nature of the condition.

  • Florence Eshalomi Lab Co-op Vauxhall and Camberwell Green

    Florence Eshalomi highlighted the personal impact of sickle cell disease, drawing on her own family experiences. She criticised the failure to provide adequate care to patients like Evan, emphasising the importance of timely blood transfusions, pain management, and proper medical understanding. She also stressed the need for better housing conditions and time off for medical appointments.

  • Greg Clark Con North Dorset

    Highlights the need for a geographical strategy to manage sickle cell, emphasizing the importance of connections between hospitals with experience in treating sickle cell and those that do not. Stresses the importance of spreading knowledge across hospital departments and ensuring timely pain relief for patients presenting in A&E. Welcomed the commitment to look at figures, suggesting circulation of APPG reports through NHS to remind A&E departments of current NICE guidance.

  • Janet Daby Lab Lewisham East

    Janet Daby highlighted the historical neglect and ignorance in treating sickle cell disease, especially affecting people of African and Caribbean descent. She raised concerns about inadequate healthcare support, racial discrimination, and lack of appropriate training for medical professionals. Daby also mentioned specific cases like Evan Nathan Smith and deaths during military training due to undiagnosed sickle cell, emphasizing the need for urgent government intervention. Will there be a similar list of professionals in certain areas who have experience working with sickle cell patients?

  • Jim Shannon DUP Strangford

    Jim Shannon spoke about his party's health spokesperson role and highlighted the importance of raising awareness for sickle cell disease. He mentioned that there are currently 12,500 to 15,000 people with sickle cell in England, with almost 25,000 hospital admissions in 2020-21. Shannon expressed concern over the lack of stem cell or bone marrow transplants available for patients and the substandard care received by sickle cell sufferers. Jim Shannon suggested that Janet Daby could act as a poster lady for blood donation campaigns to increase awareness and support for individuals with sickle cell disease.

  • Kate Osamor Lab Co-op Edmonton and Winchmore Hill

    Kate Osamor expressed concern about the tragic death of Evan Smith at North Middlesex hospital in her constituency, highlighting widespread shortcomings in sickle cell care. She endorsed recommendations to improve knowledge among healthcare professionals by mandating training on sickle cell and developing action plans for hospitals to comply with clinical guidelines for pain relief. Osamor urged the Government to undertake a study examining how racism affects patient experiences. The Minister has not addressed the bottleneck in A&E where patients are not listened to or believed.

  • Liz Kendall Lab Leicester West

    She praised the report 'No One's Listening' and highlighted issues of substandard care, racial inequalities, and discriminatory attitudes towards black people. She proposed five key areas for improvement: tackling variations in care, improving communication and joined-up care, enhancing awareness and training, addressing race and discrimination, and giving patients more voice in the system.

  • Marsha de Cordova Lab Battersea

    Congratulated the Chair on their leadership regarding sickle cell disease, highlighting challenges such as negative attitudes, lack of awareness, patient care issues, and health inequalities. Suggested that addressing these problems would require significant investment from the Government.

  • Martyn Day SNP Lincoln

    Highlights the need for greater awareness of sickle cell disease, citing the APPG report 'No One's Listening', which found substandard care and inadequate community support. Emphasises the importance of addressing systemic racism in healthcare provision.

Government Response

Maria Caulfield

The Minister reassures MPs that the Government are taking action to improve sickle cell care, including setting up 10 haemoglobinopathy coordinating centres and a national register for patients with red cell disorders. NHS England is working on education and awareness of medical professionals. Health Education England has improved the medical curriculum regarding sickle cell and thalassaemia. Additionally, NHS Blood and Transplant is improving services, and the Office for Health Improvement and Disparities is tackling health disparities across the UK.

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