Email 1 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 20 July 2018 0954 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Core Participants

Hi Redacted ndash s40 (2) Thomas Powell was the Inquiry solicitor who came to Cardiff with Catherine Nallty I

think he will lead for Wales hes 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 ndash s40 (2) infectedbloodinquiryorguk

Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 2 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 26 February 2018 0911 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Public Inquiry Contaminated Blood

Hi Redacted ndash 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 3 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 03 March 2018 1056 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject FYI Consultation on Terms of Reference

Dear Redacted ndash s40 (2) and Redacted ndash 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 httpswwwinfectedbloodinquiryorguk Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 4 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 22 March 2018 2100 To Redacted ndash s40 (2) ltwalesnhsukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Cc Julie Morgan ltJulieMorganassemblywalesgt Redacted ndash s40 (2) (NWSSP - Finance) ltwalesnhsukgt Subject RE 201819 payments

Thanks Redacted ndash 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 pound878500 I hope Welsh Government will consider this proposal for April 2018 onwards

Yours sincerely

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 4 attachment

Annual Cost of implementing

Scottish Proposal in Wales for

Haemophiliac amp Whole Blood

Patients

No of

Patients

Annual

Payment

Annual

Cost

HCV Mono Infected Stage 1 (SkiptonCaxton) Including a separate figure for the current number of widows in this group46 - -

HCV Mono Infected Stage 2 (SkiptonCaxton) Including a separate figure for the current number of widows in this group30 27000 810000

HIV Mono Infected (MFTMFET) 1 27000 27000

Co Infected HIV Stage 1 (SkiptonMFTMFET) Including a separate figure for the current number of widows in this group16 27000 432000

Co Infected HIV Stage 2 (SkiptonMFTMFET) Including a separate figure for the current number of widows in this group1 37000 37000

Widows (63 deceased assume 30 widows)

Assume 15 mono-infected 23 20250 465750

Assume 15 co-infected 23 27750 638250

Annual Cost of implementing Scottish Proposal pound2410000

One Off payment of an additional pound30000 to all those

who will not receive on-going support144 30000 pound4320000

Email 5 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 08 April 2018 1843 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE Northern Ireland payments for Infected Blood Support 201819

Hi Redacted ndash 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 201819 Kind Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

-------- Original Message -------- Subject RE Northern Ireland payments for Infected Blood Support

201819 From lt Redacted ndash s40 (2) govwalesgt

Date Fri April 06 2018 210 pm To ltinfohaemophiliawalesorggt

Dear Lynne Thank you for your emails and attachments re the payments in EnglandScotland and NI Irsquove 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

Email 5 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 08 April 2018 1843 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE Northern Ireland payments for Infected Blood Support 201819

Hi Redacted ndash 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 201819 Kind Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

-------- Original Message -------- Subject RE Northern Ireland payments for Infected Blood Support

201819 From lt Redacted ndash s40 (2) govwalesgt

Date Fri April 06 2018 210 pm To ltinfohaemophiliawalesorggt

Dear Lynne Thank you for your emails and attachments re the payments in EnglandScotland and NI Irsquove 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 ndash s40 (2) From infohaemophiliawalesorg [mailtoinfohaemophiliawalesorg] Sent 21 March 2018 1905

To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) Redacted ndash s40 (2) Cc Julie Morgan Subject Northern Ireland payments for Infected Blood Support 201819 Dear Redacted ndash 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 pound500 winter fuel payment is in addition to these payments so the annual payment in Northern Ireland and England from April is pound18500 Hep C stage 2 pound22500 HIV pound36500 HIV and Hep C Payments in Scotland are more straightforward Hep C stage 2 = pound27000 HIV and Hep C =pound37000 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 6 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 08 May 2018 1118 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE The Honeycomb Fund

Thank you Redacted ndash s40 (2) is it ok to raise this at the APPG tomorrow as Redacted ndash 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

-------- Original Message -------- Subject The Honeycomb Fund From ltgovwalesgt Date Fri May 04 2018 1107 am To ltinfohaemophiliawalesorggt

Cc ltRedacted ndash s40 (2) walesnhsukgt

Dear Lynne As discussed Irsquove 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

ldquoAs the Honeycomb Fund is money that was gifted to Macfarlane ndash 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 ldquo 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 ndash s40 (2)

Redacted ndash s40 (2)

Healthcare QualityAnsawdd Iechyd

Population Healthcare Division Yr Is-Adran Gofal Iechyd Poblogaethau

Health amp Social Services GroupYr Grwp Iechyd a Gwasanaethau Cymdeithasol

Welsh GovernmentLlywodraeth Cymru

TelFon Redacted ndash s40 (2)

E-mailE-bost Redacted ndash s40 (2) govwales

Email 7 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 12 June 2018 2010 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Inquiry meeting in Wales

Dear Redacted ndash s40 (2) I hope you are well

Redacted ndash 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 Morgans 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 thats ok with you Best Wishes Lynne This is the contact Redacted ndash s40 (2) Deputy Secretary Infected Blood Inquiry

Mobile Redacted ndash s40 (2) Address Fleetbank House 1st Floor 2-6 Salisbury Square London EC4Y 8AE

Email Redacted ndash s40 (2) infectedbloodinquiryorguk

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 7 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 12 June 2018 2010 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Inquiry meeting in Wales

Dear Redacted ndash s40 (2) I hope you are well

Redacted ndash 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 Morgans 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 thats ok with you Best Wishes Lynne This is the contact Redacted ndash s40 (2) Deputy Secretary Infected Blood Inquiry

Mobile Redacted ndash s40 (2) Address Fleetbank House 1st Floor 2-6 Salisbury Square London EC4Y 8AE

Email Redacted ndash s40 (2) infectedbloodinquiryorguk

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 8 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 21 June 2018 0835 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Meeting with the Inquiry Team

Hi Redacted ndash 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 ndash 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 dont 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 9 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 02 July 2018 0923 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Re [FWD Infected Blood Inquiry - open meeting in Cardiff on 9 July]

Thanks Redacted ndash 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

httpswwwgooglecoukmapsplaceVenue+Cymru533176214-

38331102131zdata=4m53m41s0x00x88272c64177c80688m23d5332204914d-

3816392

New Menai Science Park Anglesey httpwwwm-sparccom

I havenrsquot heard anything from them yet but will let you know when I do

Regards

Lynne

On 2 Jul 2018 at 0911 ltRedacted ndash s40 (2) govwalesgt ltRedacted ndash s40 (2) govwalesgt

wrote

Thanks Lynne

Apologies for the delay in replying I was away from the office ThursdayFriday last week Good news coverage this morning for the Inquiry If I can be of help please get in touch

Redacted ndash s40 (2) From infohaemophiliawalesorg [mailtoinfohaemophiliawalesorg] Sent 28 June 2018 1625 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltRedacted ndash s40 (2) govwalesgt Subject [FWD Infected Blood Inquiry - open meeting in Cardiff on 9 July]

FYI

Lynne Kelly Chair of Haemophilia Wales ltimage001jpggt

wwwhaemophiliawalesorg infohaemophiliawalesorg ltimage002gifgt Registered Charity No 1158941

-------- Original Message -------- Subject Infected Blood Inquiry - open meeting in Cardiff on 9 July From Contact Mailbox ltcontactinfectedbloodinquiryorgukgt Date Thu June 28 2018 1247 pm To Contact Mailbox ltcontactinfectedbloodinquiryorgukgt

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 1100am - 1300pm (arrive from 1030am) Session two 230pm - 430pm (arrive from 200pm) 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 ndash s40 (2) --

ltimage003jpggt Infected Blood Inquiry Address Fleetbank House 1st Floor 2-6 Salisbury Square London EC4Y 8AE Email contactinfectedbloodinquiryorguk

Email 10 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 11 July 2018 2218 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Inquiry meeting

Dear Redacted ndash 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 teams approach and so we felt the sessions were very worthwhile

Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 11 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 20 July 2018 0847 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Re Contaminated Wholeblood UK Petition

I havenrsquot 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 0840 Redacted ndash 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 ndash s40 (2) From infohaemophiliawalesorg [mailtoinfohaemophiliawalesorg] Sent 20 July 2018 0839 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE Contaminated Wholeblood UK Petition

Thank Catherine I didnt mean to send the email 3 times sorry

Lynne Kelly Chair of Haemophilia Wales ltimage001jpggt wwwhaemophiliawalesorg infohaemophiliawalesorg ltimage002gifgt Registered Charity No 1158941

-------- Original Message -------- Subject RE Contaminated Wholeblood UK Petition From ltgovwalesgt

Date Fri July 20 2018 830 am To ltinfohaemophiliawalesorggt

Hi Lynne

Thanks for sight of this ndash Irsquoll look into the process further and get back to you Redacted ndash s40 (2)

From infohaemophiliawalesorg [mailtoinfohaemophiliawalesorg] Sent 19 July 2018 1138 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Julie Morgan ltJulieMorganassemblywalesgt Subject Contaminated Wholeblood UK Petition

Hi Redacted ndash 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 httpswwwassemblywalesengethomee-petitionsPagespetitiondetailaspxPetitionID=1380 Regards

Lynne Kelly Chair of Haemophilia Wales ltimage001jpggt wwwhaemophiliawalesorg infohaemophiliawalesorg ltimage002gifgt Registered Charity No 1158941

Email 12 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 07 August 2018 0811 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject Core Participant Status

Hi Redacted ndash s40 (2) Just to let you know that Haemophilia Wales now has core participant status Kind Regards

Lynne Kelly

Chair of Haemophilia Wales

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 13 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 10 August 2018 0815 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject [FWD Fw Glen Wilkinson from CBC and letter being circulated

Dear Redacted ndash 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 MPs 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 dont 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 0741 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 1s 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 amp DISCRETIONARY lsquoTOP UPrsquo 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) httpswwwnhsbsanhsuksupport-scheme-membersapply-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 lsquoday to dayrsquo basis The EIBSS in England also have a discretionary lsquotop uprsquo scheme which all those infected with Hepatitis C andor HIV can apply to (see link for further information) The lsquotop uprsquo scheme also includes bereaved spouses amp partners httpswwwnhsbsanhsuksupport-scheme-membersdiscretionary-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 infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 13 August 2018 1454 To Redacted ndash s40 (2) (Velindre - Chief Executives Office) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Benefit Support) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Mary Swiffen-Walker ltwalesnhsukgt Redacted ndash s40 (2) (NWSSP - Finance) ltwalesnhsukgt Georgina Galletly (Velindre - Trust Governance) ltwalesnhsukgt Redacted ndash s40 (2) (Cardiff and Vale UHB - Haematology) ltwalesnhsukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS - Finance) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) tiscalicouk lt tiscalicoukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE WIBSS Meeting

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 MPs 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 wouldnt 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 13 attachment

Your Address Address of your MP 9 August 2018 Dear RE CONTAMINATED BLOOD SCM amp DISCRETIONARY lsquoTOP UPrsquo 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) httpswwwnhsbsanhsuksupport-scheme-membersapply-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 lsquoday to dayrsquo basis The EIBSS in England also have a discretionary lsquotop uprsquo scheme which all those infected with Hepatitis C andor HIV can apply to (see link for further information) The lsquotop uprsquo scheme also includes bereaved spouses amp partners httpswwwnhsbsanhsuksupport-scheme-membersdiscretionary-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 infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 13 August 2018 1454 To Redacted ndash s40 (2) (Velindre - Chief Executives Office) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Benefit Support) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Mary Swiffen-Walker ltwalesnhsukgt Redacted ndash s40 (2) (NWSSP - Finance) ltwalesnhsukgt Georgina Galletly (Velindre - Trust Governance) ltwalesnhsukgt Redacted ndash s40 (2) (Cardiff and Vale UHB - Haematology) ltwalesnhsukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS - Finance) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) tiscalicouk lt tiscalicoukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE WIBSS Meeting

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 MPs 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 wouldnt 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 14 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 13 August 2018 1454 To Redacted ndash s40 (2) (Velindre - Chief Executives Office) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Benefit Support) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Welfare Rights) ltwalesnhsukgt Mary Swiffen-Walker ltwalesnhsukgt Redacted ndash s40 (2) (NWSSP - Finance) ltwalesnhsukgt Georgina Galletly (Velindre - Trust Governance) ltwalesnhsukgt Redacted ndash s40 (2) (Cardiff and Vale UHB - Haematology) ltwalesnhsukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS - Finance) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) tiscalicouk lt tiscalicoukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Subject RE WIBSS Meeting

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 MPs 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 wouldnt 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

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 wouldnt 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 15 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 15 November 2018 1249 To Redacted ndash s40 (2) (Velindre - Benefit Support) ltwalesnhsukgt Redacted ndash s40 (2) (Velindre - Chief Executives Office) ltwalesnhsukgt Mary Swiffen-Walker ltwalesnhsukgt Redacted ndash s40 (2) (NWSSP - Finance) ltwalesnhsukgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) ltwalesnhsukgt Subject RE WIBSS ACTION PLAN UPDATE

Hi Ryan Apologies I have been unable to complete my actions as we havent 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

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 16 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 26 November 2018 1432 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltgovwalesgt Redacted ndash s40 (2) ltwalesnhsukgt Redacted ndash s40 (2) ltwalesnhsukgt Mary Swiffen-Walker ltwalesnhsukgt Redacted ndash s40 (2) govwales Cc Redacted ndash s40 (2) ltwalesnhsukgt Subject Infected Blood Payments

Dear All

Following the WIBSS meeting on Friday Scottish Government announced

an enhanced system of support for stage 1s see link below

httpwwwparliamentscotparliamentarybusiness28877aspxSearchTy

pe=AdvanceampReferenceNumbers=S5W-20154ampResults

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 Fridays meeting

Scottish

scheme Wales England

Stage 1 HCV pound1k- pound18900pa pound4622

pa pound4622-pound18000 pa

Stage 2 HCV pound27000 pa pound18500

pa pound18500 pa HIV and Hep C pound37000 pa pound22500-pound36500

pa pound22500-pound36500 pa

Widows pound20000-pound27000 pa No annual

payment No annual payment payment

Yours sincerely

Lynne Kelly

Chair of Haemophilia Wales 07979 527599

wwwhaemophiliawalesorg infohaemophiliawalesorg Registered Charity No 1158941

Email 17

From Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) Sent 19 November 2018 1042

To infohaemophiliawalesorg ltinfohaemophiliawalesorggt Subject FW WIBSS

ACTION PLAN UPDATE

Hi Lynne Re the attached ndash not sure exactly what I was meant to send on to you re meetings Can you remember

If you canrsquot we can have a chat on Friday Redacted ndash s40 (2)

Email 18 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 07 February 2019 1042 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltRedacted ndash s40 (2) govwalesgt Subject FYI Terence Higgins Trust

Transfer of MFT to THT

Macfarlane Trust

Beneficiaries

From Redacted ndash s40 (2) ltRedacted ndash s40 (2)

thtorgukgt (Add as Preferred

Sender)

Date Mon Jan 14 2019 514 pm To infohaemophiliawalesorg ltinfohaemophiliawalesorggt

FAO Lynne Kelly ndash 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 ndash s40 (2)

Redacted ndash s40 (2)

Macfarlane Beneficiary Support Manager

Terrence Higgins Trust

314-320 Grays Inn Road London WC1X 8DP

Email 18 From infohaemophiliawalesorg ltinfohaemophiliawalesorggt Sent 07 February 2019 1042 To Redacted ndash s40 (2) (HSS-DPH-Population Healthcare) ltRedacted ndash s40 (2) govwalesgt Subject FYI Terence Higgins Trust

Transfer of MFT to THT

Macfarlane Trust

Beneficiaries

From Redacted ndash s40 (2) ltRedacted ndash s40 (2)

thtorgukgt (Add as Preferred

Sender)

Date Mon Jan 14 2019 514 pm To infohaemophiliawalesorg ltinfohaemophiliawalesorggt

FAO Lynne Kelly ndash 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 ndash s40 (2)

Redacted ndash s40 (2)

Macfarlane Beneficiary Support Manager

Terrence Higgins Trust

314-320 Grays Inn Road London WC1X 8DP

Direct line Redacted ndash s40 (2)

Mobile Redacted ndash s40 (2)

Fax Redacted ndash s40 (2)

email Redacted ndash s40 (2)