The first experts to provide evidence to the Inquiry were the psychosocial experts. Sir Brian Langstaff explained that the reason for the psychosocial experts being first was that they naturally followed on from the Intermediaries.
The psychosocial experts attended some of the witness oral hearings last year and also watched the hearings on YouTube and were provided with 47 witness statements and 41 transcripts. The report was prepared collectively by all 7 of the psychosocial experts and there were no areas of professional disagreement regarding the contents of the report. The psychosocial experts were also asked to prepare a supplementary report answering further questions on 22nd December 2019 and this will be completed by the expert panel in due course. The first complete Psychosocial report can be found at www.infectedbloodinquiry.org.uk
The oral evidence provided by the psychosocial panel of experts was lengthy and in depth so this report will not provide information regarding all areas of discussion but the full transcript can be found in the Evidence section of the Infected Blood Inquiry website.
The panel spoke of the psychosocial impact of infection on people affected and described illness or a threat to health as a threat to a person’s sense of self. People have their own ways of making sense of and dealing with a condition and set their emotional changes. They discussed the fact that all long term illness has a psychosocial impact and that isn’t a new idea but what is new is that how to cope is better understood and supported.
The experts spoke of a staggering lack of research on the cumulative effect of multiple medical conditions. With co-morbidities those in ill health see different health care professionals who provide different and competing information and they don’t work together which results in no continuity of care. This results in a disconnect of sources of information which in turn leads to very little research into the psychosocial effects of living with multiple medical conditions.
One of the startling facts discussed by the psychosocial group was that amongst people suffering from a long term major condition 40 – 50% of those will decide not to follow treatment long term. This is because in many cases the treatment can make that person feel worse.
The expert panel discussed at length the differing psychosocial aspects on children, adolescents and adults and how lives were affected and altered at each stage of a person’s life depending on when they became infected or were told of their infection.
The experts also spoke of the impact on the family and those close to the infected person and the challenges the affected also face in a psychosocial context. In many cases their lives are changed and they have to live their lives in secrecy and avoid certain situations to avoid difficult questions from those outside the family unit.
In regards to social impacts the panel recommended obtaining the input from a health economist and Sir Brian requested that Core Participants make submissions to their legal teams or representatives on the issues that should be addressed by the health economist. The panel recommended that the Inquiry ensure that any health economist they instruct can also deal with financial toxicity and social costs and not just the impact of direct drug costs to institutions and the health service.
The expert panel also spoke of how attitudes towards infections like hepatitis C have changed over the years but work still needs to be done in regards to training of consultants and doctors. The group recommended unconscious bias training and effective and sensitive communication training. The need it to replace ignorance with information. Time needs to be given to trainee doctors in communication skills but a formal training process needs to be put in place to ensure that this is mandatory training and not just guidelines. The whole panel of experts also agreed that the training needs to be for senior doctors and consultants and not just the juniors.
Towards the end of the day the group all agreed that even after so many years there is still potential for those infected and affected to benefit from access to psychosocial support services. They discussed how there isn’t a generic form of support that suits everybody and support services must be tailored to the individual’s needs. They did add however that the greatest form of support is likely to be a successful outcome to the Inquiry.
At the end of the questioning of the psychosocial experts Sir Brian posed the panel two questions for which he didn’t require an immediate answer but asked that all of the panel consider and return to him in due course with a response. The questions were ‘could you please just think of the single biggest improvement you think could be made to stop this happening again?’ Secondly, the second part to the same question is, ‘I’ve asked what could be made, should be made?’
At the close of the day Sir Brian thanked the psychosocial experts for their time and expertise. He confirmed that the evidence they had provided added a further dimension to the witness evidence previously heard and that their evidence had shown the Inquiry the proper place for the psychosocial support and that it will meet a need.