Contaminated Blood: Haemophilia community given commitment in 2010 that DWP assessments would stop betrayed once again by government

Photo by Ashley Cooper

Fit for work? DWP might think so…

In July 2010, haemophilia campaigners Carol Grayson and Colette Wintle met with Anne Milton at the then Department of Health (DOH) now Department of Health and Social Care (DHSC) to discuss “gender justice” in relation to females with a bleeding disorder given contaminated blood and the partners and carers who looked after those infected.

During the meeting they asked that Contaminated Blood victims and their partners bereaved widows/widowers now often in ill health themselves through years of 24/7 caring for loved ones (often unsupported) not be put through continued Department of Work and Pensions (DWP) reassessment for sickness and disability benefits. They also asked for passporting regarding benefits to avoid an unnecessary and stressful assessment process. As they pointed out,

It is important to note that haemophiliacs and partners in ill health were forced out of work due to Contaminated Blood and being harmed BY the state indeed David Cameron apologised for something, “which should not have happened” and Andrew Lansley recognized the “harm” and “distress” caused to victims.

So why add to that distress? DWP assessments are declared by many MPs and disability rights campaigners as “not fit for purpose” and in the case of Contaminated Blood victims often retraumatize them during the assessment process.

Minutes related to this issue were taking during the meeting with Milton whose office recently gave permission to use the minute which reads as follows.

“CW (which is Colette Wintle) asked the minister (Anne Milton) why the Department of Work and Pensions are still targeting haemophiliacs, for repeated assessment for their entitlement to incapacity and other benefits. The Minister agreed that infected haemophiliacs and affected partners and widows should not be forced to fill in inappropriately worded forms or be subjected to physical examinations to prove entitlement.

CW pointed out that this group should be exempted by the DWP, because the recipients of long term  benefits are already  known to the DOH and DWP. The Minister has asked YF (Yemi Fegin) to contact the DWP  to ensure this is stopped”

Work Capability Assessments (WCA) have not stopped and victims continue to be retraumatized during an inhumane process often carried out by assessors not qualified in the relevant area of health affecting the claimant.

A former DWP assessor (now whistle blower) told Grayson that he was trained as a physiotherapist but was still expected to assess those with mental health problems outside his area of expertise and because he was not appropriately qualified he and other workers were googling psychiatric conditions 5 minutes before the claimant arrived. He said he felt completely out of his depth and became ill himself worrying about the harm caused to claimants through inappropriate assessments. He reported many other DWP assessors felt the same way.

Recently the following statement was made by Ruth Wakeman, the NMC’s (Nursing and Midwifery Council) Deputy Director of Education and Standards regarding DWP assessments,

“The NMC is clear that all nurses, midwives and nursing associates, must work within the limits of their competence. They must also complete any necessary training before carrying out a new role.

If there are any concerns about an individual’s practise these can be raised with the NMC. We can then investigate, and where necessary, take the appropriate regulatory action.”

A recent phone call made to the NMC confirmed they would investigate claims where this is happening.

What is the point for example in a nurse training for 3 years for a basic mental health qualification Registered Mental Nurse (RMN) and then undertaking further training in a specialist area if an untrained person can assess someone with chronic mental health issues including conditions such as PTSD which is a specialist area within mental health.

Welfare rights officers have witnessed assessors lying, falsifying reports and ignoring key medical evidence but despite complaints submitted no -one is held to account.  Watching TV, owning a pet, the weight of a handbag that a person carries are viewed as signs that a person is capable of working. Some tactics are observed to be repeatedly used to block claimants getting the financial assistance they need. One example is telling an asthmatic blowing into a peak flow meter that they have a “poor technique” when their GP states they have an “excellent technique” and reglarly score very low readings down to 30.

Contaminated blood victims are finding answers have been written to questions they were never even asked in the first place. How can that be right? Letters are received stating the DWP have all the information required BEFORE it has even been posted! There is now written evidence that having a lawyer and taking part in the Infected Blood Inquiry is being used against Contaminated Blood victims in assessment reports as signs of “fitness to work”. It is likely that travelling to give evidence will be viewed in the same way. This is cruel and inhumane, after all victims have suffered in ill health for decades now whilst also dealing with an alleged government cover-up.

It is in the interests of the DWP to force claimants back to work as government do not want to financially recognize years of harm and damage caused by the state so far refusing to compensate victims of the Contaminated Blood scandal.

Forcing sick and dying people back to work is an extremely dangerous practice putting both them and their colleagues at risk and may contravene the Health and Safety at work Act.

Back in October 2017 the DWP formed a working group with infected and affected persons (Contaminated Blood) but have largely ignored how to improve assessment in key areas of health such as the impact of living with HIV and hepatitis C plus mental health conditions focusing only on haemarthropathy, (a severe type of arthritis caused by bleeding into the joints due to haemophilia) see following link,

Click to access 2018-06-19-Haemarthropathy-Exercise-Information-Note.pdf

Haemarthropathy is important but it is HIV and hepatitis C infection that are killing haemophiliacs not haemarthropathy and these conditions are being sidelined along with Post Traumatic Stress Disorder (PTSD). Grayson resigned in protest at the lack of transparency and openness and failure to address key issues important to Contaminated Blood victims. It seemed the meetings were little more than a token gesture to get endorsement on only what DWP wanted to achieve. Minutes did not accurately reflect the content of the meeting and corections to minutes were not accepted. Campaigners are concerned that government are now using the issue of reassessment to punish those that spoke out and note reference to the resignation was brought up in a recent letter from Amber Rudd (DWP) to Grayson’s MP Nick Brown.  

DWP reassments are leading to claimants being taking off benefits, losing money and having to undergo a gruelling appeal system which can last months and in one case led to a widow being left on nil income for 6 months unable to buy food or pay bills as highlighted in Private Eye. It was left to another contaminated blood victim also on benefits to send food vouchers as there was no money for the bus fair to travel to the nearest food bank. Trussel Trust food banks distributed 1.6 million food parcels last year (up 18.8% on the previous year) many to those whose benefits were reduced or stopped altogether through sanctions.

The haemophilia widow eventually won her appeal for the 2nd time but the stress caused during this time was noted by her GP and other professionals to have significantly worsened her health. 

Independent Living website produced the following showing that PIP and ESA appeal success was the highest ever highlighting that the current system is extremely flawed to be failing so many sick and disabled persons, as follows:-

The Tribunals Service statistics show that claimants are winning PIP and ESA appeals at the highest rate ever recorded.

Overall, an extraordinary 70% of social security appeals are successful, with the claimant getting a better award than they originally received from the DWP.

Success rates for individual benefits:

• Employment and Support Allowance (ESA) 74%
• Personal Independence Payment (PIP) 73%
• Disabled Living Allowance (DLA) 66%
• Universal Credit (UC) 58%

This is an increase in successful appeals of 4% for PIP compared with the year before, and 5 percent for ESA.


The Tories have admitted that 7,990 people died within 6 months of being rejected for PIP, since 2013.

This week Laura Pidcock MP for North West Durham secured a debate on WCA in Westminster Hall calling for it to be scapped. It was noted that not one Tory MP bothered to turn up for the debate.

As Rights Info (a human rights website founded by lawyer Adam Wagner) noted,

In some cases, like that of Stephen Smith, these unwell people end up fighting with the Department of Work and Pensions from their deathbed. In other cases, they see no other route and decide to take their own life.

“Literally taking money from people who are disabled, unwell or dying and what are the worst consequences of this system? The ultimate result of this brutality? Jodie Whiten took her life 15 days after the DWP stopped her benefits for missing a work capability assessment when she was seriously ill. 

These are the real-life tragedies of a broken system.

Laura Pidcock, MP North West Durham

The Stephen Smith case caused public outrage, ITV stated,

“While in hospital being treated for pneumonia, an emaciated, six-stone Mr Smith (now deceased) had to discharge himself from hospital in January to attend a tribunal to overturn the DWP’s decision.

After his case made headlines, the DWP apologised and agreed to issue back payments of more £4,000 to Mr Smith, the benefits he should have received.”

The refunded money is now being used to pay for his funeral. The Liverpool Echo noted that Amber Rudd, Secretary of State for Work and Pensions refused to comment on the appalling treatment of Stephen Smith calling it an “opperational matter”.

A series of questions have been submitted to the Department of Health and Social Care (DHSC) and to the DWP by Grayson on assessment of those within the haemophilia community. The DOH were also asked if they would release documents under Freedom of Information (FOI) relating to the 2010 meeting with Anne Milton. The following was stated, “DHSC may hold information relevant to your request. However to comply with your request as it is currently framed would exeed the cost limit as set out in Section 12 (1) of FOIA.”. It was also stated that,

“As outlined in the report of the Department’s review into the support available to those affected by infected blood published in early 2011, the issue of exemption from Work Capability Assessment was raised during a House of Commons backbench debate on 14th October 2010 (point 1.4). Points 10.6 to 10.9 also refer: 10.9 ‘The Review considered exemption from the WCA for this patient group with the DWP. However the DWP have confirmed that individuals infected with HIV and /or Hepatitis C by NHS-supplied blood transfusion or blood products will not be granted exemption from the WCA, given that WCA is based on the principle that a health condition should not automatically be regarded as a barrier to work.”

Many of those infected are now dead and the answer above shows that PTSD in the haemophilia community was not even given consideration though since then a legal ruling now requires that PTSD regarded as a mental health issue (though often with physical symptoms) is given equal consideration with other health conditions.

This statement is a betrayal of the commitment made by Anne Milton to Grayson and Wintle in 2010 that reassessments would stop and pressure must be put on the government to honour this commitment. Once again the haemophilia community has been let down by government that has admitted to the harm and distress caused to those infected and affected on which they based only ex-gratia payments as opposed to the  proper compensation pay-outs provided in Eire.

The government is once again adding insult to injury towards a now aging infected and affected haemophilia community. In addition some partners and widows, women born in the 1950s) have also been shafted with their pensions, losing thousands of pounds as the state pension age was raised from 60 to 65 without given them time to plan ahead, another legal case pending! In the case of haemophilia widows/partners they could not do so anyway due to their extremely limited income, many having been forced out of work due to ill health as with Wintle or in the case of Grayson having to give up work to care for her husband and now also in ill-health.

Government ministers are often cold, showing little empathy towards Contaminated Blood victims. One former MP told Wintle, the worst meeting of his political career was with Andrew Lansley who allegedly stated he did not want the haemophilia community to get a penny more. On the other hand it is interesting to note that Boris Johnson ex -foreign secretary received more for two speeches (over £160,000) than most haemophiliacs received for being infected with multiple life-threatening viruses that devastated their lives! Politicians current and former love to rake in the money as we saw with the many false expenses claims whilst at the same time begrudging the haemophilia community even the most basic of benefits let alone proper compensation.

The following questions were put to the DHSC under FOI

1) How many infected haemophiliacs given contaminated blood or affected partners, widows/widowers have been reassessed for sickness and disability benefits since 2010 including ESA and PIP.

2) How many had to appeal their cases?

3) How many won at appeal?

4) How many won more than one appeal?

5) How many were compensated for their distress after winning an appeal?

An answer was received from Dorothy Crowe Freedom of Information officer it read, “DHSC holds no information relevant to your request”.

The same questions have now been put to the DWP.

The following questions have been submitted to both DOH and DWP and are now awaiting a response,

1) To ask the DWP, what research has been carried out specifically regarding PTSD in bereaved partners of haemophiliacs given contaminated blood and how many are affected?

2) What assessment has been made of the damage caused to the bereaved partners of haemophiliacs now suffering from PTSD and the impact of repeated DWP assessments in relation to retraumatizing victims?

3) What assessment has been made of the impact of DWP assessing bereaved partners of haemophiliacs in terms of failure to provide appropriately qualified assessors that have at least 3 years minimum mental health training? (PTSD is a specialist area within mental health and assessing fitness for work is not possible without understanding how PTSD including complex PTSD over many years impacts on carrying out daily tasks). I write as someone who previously trained and worked for years in mental health and worked at sister level.

4) What assessment has been carried out regarding the importance of compensating partners of haemophiliacs that now suffer from PTSD and have been unable to work for years as a result of this condition just as they have been compensated in Eire?

It is anticipated that the answers will show little or no consideration has been made regarding the impact of PTSD which over a long period can develop into complex PTSD as individuals are repeatedly exposed to harm and distress.

Regarding the continued assessment of haemophiliacs and their partners, and the commitment made by Anne Milton in 2010, the following questions have now been submitted to Amber Rudd

1) Under Freedom of Information will the DWP advise what action was taking following the meeting with Anne Milton to honour the commitment and ensure reassessments for infected haemophiliacs and their partners many also now suffering chronic health problems from years of caring stopped?

2) Will the DWP now issue an apology to all those within the haemophilia contaminated blood community that have been reassessed and retraumatised since 2010 and ensure their benefits are reinstated if changes have been made causing them enormous additional stress, further harm and loss of money since that date. Lawyers for haemophiliacs have the full minutes and we have permission from Anne Milton’s office to use the minute.

3) To ask the DWP if they are aware that in Eire family members of haemophilia contaminated blood victims have been compensated for PTSD? What does the DWP intend to do to ensure victims are fully compensated in the UK and to educate DWP staff regarding victims living with this condition and now participating in the Infected Blood Inquiry so that staff do not continue to cause unnecessary trauma and abuse?

The response is awaited, don’t hold your breath… it is fully expected haemophiliacs will be shafted and betrayed by the government once again!

What is disturbing is that long standing campaigners of 30 years and are being repeatedly left out of meetings with the DHSC and DWP and far too often those negotiating for haemophiliacs are neither infected nor affected and clueless to the reality of their daily lives. An FOI showed that government did not even have an accurate list of haemophilia campaign groups or date they were set up with some ommitted from the list entirely… incompetence or by design?

Despite lawyers writing several letters to the Infected Blood Inquiry on the distress caused by DWP assessments and phone calls made to the Red Cross helpline set up to support victims, so far the Inquiry has been silent on this issue.

However government beware, there is a rising anger amongst disability rights activists who are now joining climate change protesters with more direct action expected on the streets and further legal challenges already being considered.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.



About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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