Sickle Cell and Thalassaemia APPG

First Registered: 28/09/2017 • Last updated on: 14/07/2021

Official Page

To reduce the inequalities faced by sickle cell and thalassaemia patients in the UK. To improve standards of care and address other critical issues, as recommended by the key stakeholders.

Note: All-Party Parliamentary Groups (APPGs) are informal, cross-party groups formed by MPs and Members of the House of Lords who share a common interest in a particular policy area, region or country. APPGs have no official status within Parliament.


This content was generated for your convenience by Parallel Parliament and does not form part of the official record.
Recent Documents related to Sickle Cell and Thalassaemia

1. Sickle cell and thalassaemia screening: information for fathers
10/01/2020 - Public Health England (PHE)
- View source

Found: Guidance Sickle cell and thalassaemia screening: information for fathers Leaflet

2. Family origin questionnaire: sickle cell and thalassaemia screening
01/10/2019 - Public Health England (PHE)
- View source

Found: Family origin questionnaire: sickle cell and thalassaemia screening - GOV.UK

3. Screening tests for you and your baby: easy guides
19/06/2020 - Public Health England (PHE)
- View source

Found: Screening for sickle cell disease and thalassaemiaAn easy guide to screening tests when you are pregnant

4. Sickle cell and thalassaemia screening: care pathway
29/03/2021 - Public Health England (PHE)
- View source

Found: Sickle cell and thalassaemia screening: care pathway This document describes the sickle cell

5. Sickle cell and thalassaemia screening: data report 2017 to 2018
02/03/2020 - Public Health England (PHE)
- View source

Found: Sickle cell and thalassaemia screening: data report 2017 to 2018 Data for the NHS sickle cell

Latest Documents
Recent Speeches related to Sickle Cell and Thalassaemia

1. BAME Blood, Stem Cell and Organ Donation
27/06/2018 - Westminster Hall

1: That this House has considered BAME blood, stem cell and organ donation.It is a pleasure to serve - Speech Link
2: chair of the all-party parliamentary group on stem cell transplantation. My hon. Friend makes a point that - Speech Link
3: ethnic backgrounds make up just 15% of the stem cell register, but campaigns such as Cure Kaiya, which - Speech Link

2. Sickle Cell Anaemia
10/12/2014 - Westminster Hall

1: this matter under your chairmanship, Mr Owen. Sickle cell anaemia affects an estimated 12,000 to 15,000 - Speech Link
2: thereabouts, but life expectancy for those with sickle cell anaemia is 40 to 50, which is better than it - Speech Link
3: past seven years or so with the Wolverhampton sickle cell care group. It provides hugely needed and valuable - Speech Link

3. UK Rare Diseases Framework
24/03/2021 - Westminster Hall

1: the all-party parliamentary group on sickle cell and thalassaemia, I know that this subject is of great - Speech Link
2: Member for Thirsk and Malton (Kevin Hollinrake); thalassaemia, raised by my hon. Friend the Member for Enfield - Speech Link
3: mentioned—motor neurone disease, muscular dystrophy, PKU, thalassaemia, neurofibromatosis and Batten disease —are all - Speech Link

4. NHS Long-Term Plan: Implementation
01/07/2019 - Commons Chamber

1: all-party parliamentary group on sickle cell and thalassaemia. Sickle cell is very much a hidden disability - Speech Link
2: crew, we attended a patient who suffered from sickle cell, and it was horrific to see the degree of pain - Speech Link

5. Health: Stroke
23/07/2014 - Grand Committee

1: conditions—most commonly, congenital heart disease and sickle cell disease. Other underlying causes are infectious - Speech Link
2: Her view was that if they knew the child had sickle cell disease, or had had a fall or an RTA, they certainly - Speech Link
3: awareness of the characteristics and consequences of sickle cell disease and teachers should try to identify the - Speech Link

Latest Speeches
Recent Questions related to Sickle Cell and Thalassaemia
1. Sickle Cell Diseases
asked by: Alex Norris
10/06/2021
... what plans his Department has to help improve the (a) availability of and (b) access to innovative treatments for sickle cell disease.

2. Sickle Cell Diseases
asked by: Alex Norris
10/06/2021
... what recent assessment his Department has made of the (a) availability of and (b) access to innovative treatments for sickle cell disease in the NHS.

3. Sickle Cell Diseases
asked by: Alex Norris
08/06/2021
... what data his Department holds on the number of patients with sickle cell disease who access emergency care services during a vaso-occlusive crisis.

4. Sickle Cell Diseases
asked by: Diana Johnson
23/05/2019
... if he will provide updated estimates of the costs to the NHS of treating sickle cell anaemia in (a) England (b) each NHS England region and (c) each Clinical Commissioning Group area in each year since 2009-10.

5. Sickle Cell Diseases
asked by: Diana Johnson
23/05/2019
... (b) each NHS England region and (c) each Clinical Commissioning Group area in each year since 2009-10.

Latest Questions
7 Current APPG Officers
Pat McFadden Portrait
Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017
Janet Daby Portrait
Janet Daby
Vice Chair
Labour - Lewisham East
Joined: 31st July 2019
Florence Eshalomi Portrait
Florence Eshalomi
Officer
Labour (Co-op) - Vauxhall
Joined: 20th May 2020
Baroness Benjamin Portrait
Baroness Benjamin
Officer
Liberal Democrat - Life peer
Joined: 28th September 2017
Contact Details

Registered Contact:

Pat McFadden MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 4036.

Email: mcfaddenp@parliament.uk

Public Enquiry Point:

Seyi Afolabi, Sickle Cell Society, 54 Station Road, London NW10 4UA. Tel: 020 8961 7795

Email: seyi.afolabi@sicklecellsociety.org

Secretariat:

Sickle Cell Society acts as the group's secretariat. http://www.sicklecellsociety.org/

Group's Website:

https://www.sicklecellsociety.org/sctappg/

Benefits in Kind
Date
26 Feb 2021
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 26/02/2021 To : 25/02/2022
Value
£33,001
Date
26 Feb 2020
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 26/02/2020 To : 25/02/2021
Value
£24,001
Date
7 Sep 2018
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2018
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2018
Source
UK Thalassaemia Society
Description
UK Thalassaemia Society is funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2017
Source
Novartis
Description
Secretariat   From : 07/09/2017 To : 30/11/2017
Value
£1,501
Date
7 Sep 2017
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2017 To : 06/09/2018
Value
£13,501
Date
7 Sep 2017
Source
UK Thalassaemia Society
Description
UK Thalassaemia Society is funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2017 To : 06/09/2018
Value
£13,501

No direct financial benefits are on record for the Sickle Cell and Thalassaemia APPG

Former APPG Officers
Helen Grant Portrait
Helen Grant
Officer
Conservative - Maidstone and The Weald
Joined: 20th May 2020
Departed: 2nd June 2021
Pat McFadden Portrait
Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017
Departed: 5th November 2019
Bambos Charalambous Portrait
Bambos Charalambous
Officer
Labour - Enfield, Southgate
Joined: 2nd January 2019
Departed: 5th November 2019
Diane Abbott Portrait
Diane Abbott
Chair & Registered Contact
Labour - Hackney North and Stoke Newington
Joined: 28th September 2017
Departed: 19th June 2019