Email 1
From: [email protected]
Hi Redacted – s40 (2)
Thomas Powell was the Inquiry solicitor who came to Cardiff with Catherine Nallty. I think he will lead for Wales, he's Australian (I think) and has connections with Abergavenny. The Inquiry are asking for expressions of interest to be made by today, 20th July for both witnesses and core participants
His email address Redacted – s40 (2) @infectedbloodinquiry.org.uk
Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 2
From: [email protected]
Hi Redacted – s40 (2)
I hope you are well.
I have had a call from the Deputy Secretary to the Inquiry Catherine McNulty. They are planning some consultation meetings with Justice Brian Langstaff, Chair of the Inquiry and the various groups. Would it be possible for myself and Michael Imperato to meet with you to discuss further?
Many Thanks
Lynne
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 3
From: [email protected]
Dear Redacted – s40 (2) and Redacted – s40 (2)
I wanted to let you know that Haemophilia Wales and Michael Imperato our legal representative will be meeting Justice Langstaff on 14th March to discuss Terms of Reference for the Inquiry.
The Consultation onTerms of Reference for the Infected Blood Inquiry has just gone live is and closes on 26th April 2018
https://www.infectedbloodinquiry.org.uk/
Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 4
From: [email protected]
Thanks Redacted – s40 (2).
The attached paper is a breakdown of the cost of implementing the Scottish scheme for living Haemophilia and whole blood patients with HIV and Hep C and Hep C stage 2 in Wales. We estimate there will be an additional annual cost of £878,500
I hope Welsh Government will consider this proposal for April 2018 onwards.
Yours sincerely
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 4 attachment
Annual Cost of implementing Scottish Proposal in Wales for Haemophiliac & Whole Blood Patients
No of Annual Annual Patients Payment Cost
HCV Mono Infected Stage 1 (Skipton/Caxton) Including46 a separate - figure for - the current number of widows in this group
HCV Mono Infected Stage 2 (Skipton/Caxton) Including30 a separate 27,000 figure 810,000 for the current number of widows in this group
HIV Mono Infected* (MFT/MFET) 1 27,000 27,000
Co Infected HIV Stage 1 (Skipton/MFT/MFET) Including16 a separate 27,000 figure 432,000 for the current number of widows in this group
Co Infected HIV Stage 2 (Skipton/MFT/MFET) Including1 a separate 37,000 figure 37,000 for the current number of widows in this group
Widows (63 deceased, assume 30 widows)
Assume 15 mono-infected 23 20,250 465,750
Assume 15 co-infected 23 27,750 638,250
Annual Cost of implementing Scottish Proposal £2,410,000
One Off payment of an additional £30,000 to all those 144 30,000 £4,320,000 who will not receive on-going support
Email 5
From: [email protected]
Hi Redacted – s40 (2)
I think the meeting with Justice Langstaff went well, he appeared to be open and sympathetic and we had plenty of time to cover everything. We met the Inquiry team and the solicitor to the Inquiry Brian Stanton and they too were very welcoming.
I look forward to hearing from you as soon as possible regarding the payments for 2018/19.
Kind Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
------Original Message ------Subject: RE: Northern Ireland payments for Infected Blood Support 2018/19 From: < Redacted – s40 (2) @gov.wales> Date: Fri, April 06, 2018 2:10 pm To:
Dear Lynne Thank you for your emails and attachments re the payments in England/Scotland and NI. I’ve been on leave for the past couple of weeks so am catching up on my mails.
We are currently looking at the ex-gratia payment schemes for this financial year and hope to be able to provide advice to the Cab Sec shortly. As soon as we are in this position I will contact you again.
How did the meeting go with the Inquiry Chair? I met some of the admin tem before I went on leave, they stressed that they wanted to work with us here in Wales to get the information needed to make the Inquiry meaningful.
Kind regards Redacted – s40 (2)
From: [email protected] [mailto:[email protected]] Sent: 21 March 2018 19:05 To: Redacted – s40 (2) (HSS-DPH-Population Healthcare); Redacted – s40 (2) Cc: Julie Morgan Subject: Northern Ireland payments for Infected Blood Support 2018/19
Dear Redacted – s40 (2)
Northern Ireland have now announced an up lift in payments for Infected Blood Support 2018-19 in line with England, see attached.
The £500 winter fuel payment is in addition to these payments so the annual payment in Northern Ireland and England from April is £18,500 Hep C stage 2, £22,500 HIV, £36,500 HIV and Hep C.
Payments in Scotland are more straightforward Hep C stage 2 = £27,000, HIV and Hep C =£37,000
Wales now stands to fall behind on payments compared with the rest of the UK.
Please can Welsh Government consider introducing the Scottish scheme to simplify the payment scheme with a simple medical review panel instead of a complex Special Category Mechanism, for those who have Hep C stage 1 but their quality of life is significantly impacted by the virus.
Please contact me if you need further information on the above
Yours sincerely
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941 Email 6
From: [email protected]
Thank you Redacted – s40 (2), is it ok to raise this at the APPG tomorrow? as Redacted – s40 (2) will be there and we know that the Macfarlane Trust are means testing before agreeing to make a grant from the Honeycomb fund.
Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
------Original Message ------Subject: The Honeycomb Fund From: <@gov.wales> Date: Fri, May 04, 2018 11:07 am To:
Dear Lynne As discussed I’ve got in contact with my colleague at the Department of Health who oversees this area of work for England. The following information has been provided:
“As the Honeycomb Fund is money that was gifted to Macfarlane – this is not money that we (Department of Health) can ask for accountability on. It is for the Chair and the board to make decisions about what to do with the money. This also applies to the Wilson Fund. “
It would appear therefore that we are unable to query the use of the funding or the guidelines they put in place for applications.
Happy to discuss Redacted – s40 (2) Redacted – s40 (2) Healthcare Quality/Ansawdd Iechyd Population Healthcare Division/ Yr Is-Adran Gofal Iechyd Poblogaethau Health & Social Services Group/Yr Grwp Iechyd a Gwasanaethau Cymdeithasol Welsh Government/Llywodraeth Cymru Tel/Fon: Redacted – s40 (2) E-mail/E-bost: Redacted – s40 (2) @gov.wales
Email 7
From: [email protected]
Dear Redacted – s40 (2)
I hope you are well.
Redacted – s40 (2) from Inquiry team has been in touch as they are proposing to have an open meeting in Wales. She was asking for suggestions on suitable venues and contacts in Welsh Govt. I have given her your name, email and telephone number. I have also given Julie Morgan's contact details. I have said that we have held meetings in the Pierhead Building and also at the All Nations Centre. I will be meeting her with the Inquiry team in London on the 19th June for an update about the Inquiry. Hope that's ok with you Best Wishes Lynne
This is the contact: Redacted – s40 (2) Deputy Secretary, Infected Blood Inquiry Mobile: Redacted – s40 (2) Address: Fleetbank House, 1st Floor, 2-6 Salisbury Square, London, EC4Y 8AE Email: Redacted – s40 (2) @infectedbloodinquiry.org.uk
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 8
From: [email protected]
Hi Redacted – s40 (2)
We met with Justice Langstaff and the Inquiry team on Tuesday.
He had examined all submissions made to the Inquiry from groups and individuals and had identified key themes to be examined in the Terms of Reference, he sent the Terms of Reference to Redacted – s40 (2) at the Cabinet Office on the 7th June.
The Terms of Reference were sent to the devolved Governments last Friday and we were given an overview of the main themes (but we did not see them). From what we told, we felt that they covered everything we had asked for in our submission. We were told that there would be expert advisory groups rather than a panel, which we would prefer as we would prefer the final decision to be taken by Justice Langstaff.
As soon as the Terms of Ref are approved by the devolved powers then they will be announced by the Cabinet Office in a written or oral statement.
I don't have a date for the Inquiry meeting in Wales yet but they did say that they would be arranging hearings in Wales during the Inquiry.
Best Wishes
Lynne
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941 Email 9
From: [email protected]
Thanks Redacted – s40 (2) I am on my way to London now as the Inquiry team have called a meeting. The Terms of Ref will be published by Cabinet Office written statement after 3pm this afternoon. As you have seen below there is an open meeting at the All Nations Centre in Cardiff on the 9th July. I have asked that the Inquiry arrange a meeting for North Wales families as some are too frail to travel to Cardiff/ Birmingham/ Liverpool. I have suggested that the meeting could be held at Ysbyty Gwynedd, Bangor or
Theatre and Conference centre Llandudno https://www.google.co.uk/maps/place/Venue+Cymru/@53.3176214,- 3.8331102,13.1z/data=!4m5!3m4!1s0x0:0x88272c64177c8068!8m2!3d53.3220491!4d- 3.816392
New Menai Science Park, Anglesey http://www.m-sparc.com/
I haven’t heard anything from them yet but will let you know when I do
Regards
Lynne
On 2 Jul 2018, at 09:11,
Thanks Lynne Apologies for the delay in replying I was away from the office Thursday/Friday last week.
Good news coverage this morning for the Inquiry.
If I can be of help please get in touch. Redacted – s40 (2)
From: [email protected] [mailto:[email protected]] Sent: 28 June 2018 16:25 To: Redacted – s40 (2) (HSS-DPH-Population Healthcare)
FYI
Lynne Kelly Chair of Haemophilia Wales
------Original Message ------Subject: Infected Blood Inquiry - open meeting in Cardiff on 9 July From: Contact Mailbox
Dear all,
You are receiving this email as you have previously expressed a wish to be contacted by the Infected Blood Inquiry.
We are holding an open meeting in Cardiff on 9 July for those who have been infected and affected by infected blood and blood products.
We will be holding two sessions in Cardiff, as follows:
Date: 9 July 2018 Session one: 11.00am - 13.00pm (arrive from 10.30am) Session two: 2.30pm - 4.30pm (arrive from 2.00pm) Available spaces: 35 people per session
We will be able to pay reasonable expenses for attending these meetings.
If you would like to attend one of these sessions, please confirm your attendance by 5pm on 4 July by replying to this email with your name, contact number, chosen session and any additional guests you would like to bring. Once confirmed, you will receive a confirmation email with the venue details. Please do not book travel without this confirmation.
Places will be issued on a first come, first serve basis.
If you cannot attend either of these meetings, please do not worry. We will be in contact again with further dates for future meetings across the UK.
Kind regards,
Redacted – s40 (2)
--
Email 10
From: [email protected]
Dear Redacted – s40 (2)
Just to let you know that the meeting with the Inquiry team in Cardiff went very well this week.
There were 25 in each session, the Terms of Reference were distributed and discussed.
Everyone felt encouraged by the Inquiry team's approach and so we felt the sessions were very worthwhile.
Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 11
From: [email protected]
I haven’t received a direct email but have applied to the Inquiry on behalf of Haemophilia Wales to be a core participant On 20 Jul 2018, at 08:40, Redacted – s40 (2) wrote:
At least we got it!
Have you had an email inviting you (Haemophilia Wales) to apply to be core participants in the Inquiry?
Redacted – s40 (2)
From: [email protected] [mailto:[email protected]] Sent: 20 July 2018 08:39 To: Redacted – s40 (2) (HSS-DPH-Population Healthcare) <@gov.wales> Subject: RE: Contaminated Wholeblood UK Petition
Thank Catherine, I didn't mean to send the email 3 times sorry!
Lynne Kelly Chair of Haemophilia Wales
------Original Message ------Subject: RE: Contaminated Wholeblood UK Petition From: <@gov.wales> Date: Fri, July 20, 2018 8:30 am To:
Hi Lynne Thanks for sight of this – I’ll look into the process further and get back to you. Redacted – s40 (2)
From: [email protected] [mailto:[email protected]] Sent: 19 July 2018 11:38 To: Redacted – s40 (2) (HSS-DPH-Population Healthcare) <@gov.wales>; Julie Morgan
Hi Redacted – s40 (2) and Julie
One of the English wholeblood campaigning groups have decided to start the attached petition, the facts are incorrect and misleading and we definitely do not support it. I have asked them to remove it and they have refused, it is now being retweeted by the Hep C Trust. https://www.assembly.wales/en/gethome/e- petitions/Pages/petitiondetail.aspx?PetitionID=1380
Regards
Lynne Kelly Chair of Haemophilia Wales
Email 12
From: [email protected]
Hi Redacted – s40 (2) Just to let you know that Haemophilia Wales now has core participant status Kind Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 13
From: [email protected]
Dear Redacted – s40 (2)
I thought you should be aware of the post below which was sent to me from a closed facebook group Contaminated Blood Campaign run by Glenn Wilkinson who is Diana Johnson MP's constituent from Hull. The same post is on the Contaminated Wholeblood Uk closed group run by Michelle Tolley from Norfolk. Haemophilia Wales has not been contacted by either group, we don't support what is being said but we do need some clarity on the issues below:
1. Has a decision been made by Welsh Government about the panel for people stage 1s to appeal to if they are more impacted by Hep C? As you know we would not want the English SCM system implemented in Wales as the feedback in England is that the scheme is too complex and bureaucratic.
2. Has a decision been made by Welsh Government about Discretionary support? As you know we did not favour discretionary support but higher payments to replace them and so this remains an issue.
Kind Regards
Lynne
This is the facebook post that someone forwarded to me:
Sent: 09 August 2018 07:41 To: lynne kelly Subject: Glen Wilkinson from CBC and letter being circulated.
"Following on from the meeting I had with Diana Johnson and the discussion regarding the failures of the scheme in Wales, CBC will be writing to officials in Wales, including the Welsh MPs that are members of the APPG on Haemophilia and Contaminated Blood, highlighting the fact the stage 1's registered with the Welsh scheme are being left behind in terms of the support that is available to them when compared with other schemes operating within the UK. We have also prepared a template letter for those of you that would like to write to your MP or Welsh Assembly MP which highlights the stage 1 discrimination within the Welsh scheme. Feel free to alter the letter as you see fit to reflect your own circumstances."
Email 13 attachment
Your Address
Address of your MP
9 August 2018
Dear
RE: CONTAMINATED BLOOD, SCM & DISCRETIONARY ‘TOP UP’ PAYMENT SCHEME
I am writing to you as my MP to highlight the lack of support that I as a stage 1 beneficiary of the Wales Infected Blood Support Scheme (WIBSS) receive, this is in sharp contrast to the support being provided in England, Scotland and Northern Ireland.
You may be aware that the English Infected Blood Support Scheme (EIBSS) has a Special Category Mechanism scheme (SCM) set up which allows Hepatitis C stage 1 victims to apply for higher annual payments. (see link for further information) https://www.nhsbsa.nhs.uk/support- scheme-members/apply-special-category-mechanism-hepatitis-c-stage-1
Regrettably, the Wales Infected Blood Support Scheme (WIBSS) do not have anything similar to the Special Category Mechanism scheme (SCM) in place so there are many stage 1 victims such as myself who are struggling on a ‘day to day’ basis.
The EIBSS in England also have a discretionary ‘top up’ scheme which all those infected with Hepatitis C and/or HIV can apply to (see link for further information). The ‘top up’ scheme also includes bereaved spouses & partners https://www.nhsbsa.nhs.uk/support-scheme- members/discretionary-support-scheme Again, the WIBSS in Wales do not have anything similar in place.
I would like you to write to Vaughan Gething AM, Cabinet Secretary for Health and Social Services on my behalf, asking him to review the situation as a matter of urgency as I believe Hepatitis C stage 1 victims such as myself registered with the scheme in Wales are being left even further behind than the rest of those registered with the schemes in other parts of the UK. Any suggestions that we should wait for the UK wide Public Inquiry to conclude before any changes to the current system can be made, would not be acceptable as the Inquiry will take a number of years to conclude which would further delay the urgent support myself and others need urgently.
Yours sincerely
Email 14
From: [email protected]
Hi Lisa
Could you include an update on Hepatitis C stage 1 panel and Discretionary support please.
As you are already aware we do not support the SCM (Special Category Mechanism) which was adopted by the English Infected Blood Support Scheme. We know that this continues to cause problems in England and we believe this will be a retrograde step in line with the previous Trusts' approach.
We do however feel that Welsh Government should urgently address this issue so that those who are more impacted by Hep C than stage 1 can apply to receive more support if needed. We have consistently proposed that Welsh Govt adopts a simple panel approach headed by Dr Andrew Yeoman Hepatologist with applicants needing to provide evidence to the panel. This would be more acceptable to everyone and is in line with the tailored service WIBSS already provides.
The issue of Discretionary support also needs to be addressed as Welsh Government have promised that no one will be worse off under the Welsh scheme, we do need clarification on what people can actually apply for to prevent problems in the future.
For your information : A Welsh Govt petition has been set up by 2 English campaigning groups and a letter has been sent to Vaughn Gething with Welsh AMs and MPs copied in asking for Welsh Govt to implement the SCM scheme in Wales. The petition and letter were organised by Contaminated Wholeblood UK and Contaminated Blood Campaign. They are led by Glenn Wilkinson, Richard Wilkinson, Michelle Tolley, Jackie Britton, Ella Taylor who have no connection with Wales. Glenn Wilkinson is Diana Johnson MP's constituent. The campaigners say they are representing Welsh beneficiaries but we do not know who they are as they have not contacted us. Diana Johnson MP Chairs the APPG at Westminster and Jackie Doyle Price ( the Minister responsible for Blood Policy) has been summoned twice to meetings to answer questions on the problematic support scheme including the difficulties people are having with the SCM.
We wouldn't want to see the same problems in Wales as Haemophilia Wales and the Haemophilia Centres throughout Wales continue to receive very good feedback about WIBSS.
I therefore hope that the above issues regarding stage 1s and Discretionary support can soon be resolved.
Yours sincerely
Lynne Kelly Chair of Haemophilia Wales 07979 527599
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 15
From: [email protected]
Hi Ryan Apologies, I have been unable to complete my actions as we haven't had a Cross Party Group Meeting this quarter. The CPG meeting was superseded by Inquiry team meetings as they visited Cardiff on 26th October and will visit North Wales on 4th December (see attached) See you on the 23rd November Kind Regards
Lynne Kelly Chair of Haemophilia Wales
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 16
From: [email protected]
Dear All
Following the WIBSS meeting on Friday, Scottish Government announced an enhanced system of support for stage 1s see link below . http://www.parliament.scot/parliamentarybusiness/28877.aspx?SearchTy pe=Advance&ReferenceNumbers=S5W-20154&Results
This now means that all Welsh beneficiaries are receiving less than the rest of the UK.
People in Wales are naturally very angry about this situation.
As a charity we are extremely concerned that this situation will damage the previously good relationship with Welsh Govt and the positive impact of WIBSS.
Haemophilia Wales is asking WIBSS to cost the Scottish support payments including the new stage 1 enhanced payments and formally submit this proposal to Welsh Government as a matter of urgency.
We are asking Welsh Govt to act quickly to bring payments in line with Scotland.
The chair of the Inquiry Justice Langstaff has already written to David Lidington at the Cabinet Office asking him to address the differences in payments across the UK due to the stories of financial hardship people expressed to him during the Preliminary Hearings.
Below is a comparison of the UK schemes.
I have attached is the Access to medical records flyer for the Inquiry produced by NHS Wales as promised at Friday's meeting
Scottish scheme Wales England Stage 1 HCV £1k- £18,900pa £4,622 pa £4,622-£18,000 pa Stage 2 HCV £27,000 pa £18,500 pa £18,500 pa HIV and Hep C £37,000 pa £22,500-£36,500 pa £22,500-£36,500 pa Widows £20,000-£27,000 pa No annual payment No annual payment payment Yours sincerely Lynne Kelly Chair of Haemophilia Wales 07979 527599
www.haemophiliawales.org [email protected] Registered Charity No: 1158941
Email 17
From: Redacted – s40 (2) (HSS-DPH-Population Healthcare) Sent: 19 November 2018 10:42 To: '[email protected]'
Hi Lynne
Re the attached – not sure exactly what I was meant to send on to you re meetings. Can you remember?
If you can’t we can have a chat on Friday
Redacted – s40 (2)
Email 18
From: [email protected]
Transfer of MFT to THT Macfarlane Trust
Beneficiaries
From: Redacted – s40 (2) @tht.org.uk> Sender) Date: Mon, Jan 14, 2019 5:14 pm To:"'[email protected]'" FAO Lynne Kelly – Chair Dear Lynne, Thank you for your recent email to Terrence Higgins Trust and please accept my apologies for the slight delay in responding. Terrence Higgins Trust has indeed taken on the remaining assets of the MFT. This was at the end of December and we are in the process of deciding what would be the best ways to support former MFT registrants. Unfortunately due to general data protection regulations we are unable to obtain any details of the MFT registrants apart from nine people who had loans from MFT. We are therefore very keen to let individuals know that we are here to support them and would wish to hear from them about what services would be the most beneficial. Obviously this will vary enormously. It may be of value for us to have a chat to discuss this further as I am sure Haemophilia Wales could help us reach people we can help. Myself and Terrence Higgins Trust are very aware of the many issues and struggles that people infected with contaminated blood products have faced over the past three decades and we want to ensure we can be here to support people, appropriately, in any way we can. In the first instance individuals can contact me directly either on this email or the mobile number below. If people get my voicemail I will endevour to respond to messages as quickly as possible. If you would be available for a chat do let me know and we can arrange a time for a call. Any help you can offer us to reach former MFT registrants would be very welcome indeed. Kind regards Redacted – s40 (2) Redacted – s40 (2) Macfarlane Beneficiary Support Manager Terrence Higgins Trust 314-320 Gray's Inn Road, London WC1X 8DP Direct line: Redacted – s40 (2) Mobile: Redacted – s40 (2) Fax : Redacted – s40 (2) email: Redacted – s40 (2)