11 November 2022: Psychology Panel - A

This was the second time psychology was the focus of a panel of witnesses. The psychologists and their handlers came before the Inquiry to give an update on progress made. It was a reasonable report if you take England out of the reckoning. On this occasion there were two witnesses in person and four by remote. All four nations were represented. Without any desire to cause offence, it was noticeable that when making the oath both of those from Northern Ireland each had the biggest copies of the Bible ever seen at the Inquiry.

Counsel invited each person to give a brief overview of their role and connection to the Inquiry interests. They were a mix of senior managers, service managers, and clinical psychologists currently providing direct psychosocial support to people infected and affected by the Contaminated Blood Scandal.

Starting in Northern Ireland, since 2019 there has been a specialist psychological service for infected and affected patients after the Inquiry had asserted a dedicated need. Prior to that it was a matter of referrals being made to general psychological provision. The access to the service is open to anyone “affected”. Nearly all referrals are seen within six weeks. Types of support have included issues of adjustment, loss, grief, dealing with the Inquiry, trauma, etc. Initially, sessions were face-to-face until Covid emerged. Video conferencing replaced that as required, and currently there is the option of either. There is no cap on the length of time or number of sessions a person can access. The service funding was initially linked to the period of the Inquiry, and work is ongoing to make a business case to allow it to continue after the Inquiry ends. The plan is to widen the service to include anyone with a bleeding disorder even if they have not been affected by infected blood. There are 38 people who have received a service.

Wales was similar to Northern Ireland in terms of the timescales in establishing the service. The service is open-ended and there is no limit of access. The range of interventions are again similar to Northern Ireland, including family work. The instigation of the service arose from the specialist need of the patient group and their circumstances. It is wider that exclusively a psychological service since it involved counselling too. Home visits are sometimes an option, and there are plans to develop it into a more comprehensive “wellness” service, including peer support, and the beginnings of a “buddy “ scheme. It sits within the financial support scheme, and this is seen as a benefit. There are just below 40 active patients being seen currently, but over 80 people have accessed the service overall.

In Scotland, there was a 2016 pilot project covering bleeding disorder patients in Lothian and funded by the Scottish Government. From 2018 the service was extended to cover all of Scotland, focussing on bleeding disorder patients (and not just those involved with the Inquiry matters). The work was linked to the five haemophilia comprehensive care centres. People are seen within ten weeks, normally a lot sooner than that. There is no cap on the time people can be involved, and they may return after leaving. It is mostly one-to-one sessions covering anger, stigma, shame, guilt, depression, trauma, suicidality, PTSD, loss, grief, and many other themes. The service links to the medical team as required and other family members if that is appropriate. Referrals can be by the individual, by clinicians (primary and acute), and via the charities. Covid had the usual impacts, and the flexibility has continued. There are specific clinics in Edinburgh and Glasgow. Work has involved children on occasion. There have been 255 referrals overall, with 47% of those being people infected and affected by contaminated blood.

Still in Scotland, a newer element of the provision extended the work to include all those infected and affected but not as a result of bleeding disorder product treatments (i.e. transfusion folks). There are similar levels of access, and what is on offer is as with the inherited bleeding disorder community. It is more challenging to access people since patients are not connected to a haemophilia centre. The majority are self-referrals since many do not have a treating clinician. The service is for anyone registered with SIBSS, so that can include people from overseas. They are developing a cognitive screening tool due to the fact that Dr Gillanders (who delivers the service) is a neuropsychologist and had recognised the possible impact of HCV and HIV on cognitive issues. The service has received 28 referrals to date.

The Infected Blood Psychology Network was initiated by Wales. It was seen as a way to share practice, and to practically manage cases when people move location. Mainly involving Wales, Northern Ireland, and Scotland, there have been discussions about parity and sharing best practice, among other matters of common interest. The Network has included linking with England where things are not so advanced. Parity is considered important since the types of issues are very specialist to the infected and affected community across the UK. Any lack of parity negatively impacts on people who have already lived with detriments and denial of services for many years. The provision should be specialist, not least for the reason of giving people confidence and avoiding the need to repeat telling by individuals of their situation, which itself can be re-traumatising. General psychological services may not appreciate the background factors, and so may underestimate these. It should be a holistic experience with multi-disciplinary inputs.

Counsel brought up the common sense of injustice in the historical context, as well as the impact of years of campaigning and fighting against the resistance of the NHS to provide needed services and acknowledge the harms. This was agreed as a factor, and it confirmed the need for the specialist/bespoke nature of the service. The usefulness of the charities was highlighted with the knowledge they can pass on, and the access to people who might access the services.

The past experience of people being given psychological support which was limited to a number of sessions or timescale was seen as unhelpful. It was unhelpful due to the ongoing and recurring nature of the patients’ difficult psychological experiences. It is not a “here and now” service. As people have new experiences, face different challenges, move through life stages, confront unexpected challenges, follow the Inquiry, and more, then people may require to return for a similar or different issue. The flexibility is seen as essential. As this theme was discussed, there was clear unanimity on the aspects of the discussion. It was seen as important for people to know the service would be there for them in the long term.

(By this point in the session the silence from England was screaming out loud.)

The stability of funding situations was seen as crucial. The need has been established and is not going to go away. There is a requirement for a holistic and long term strategy. “I can’t see a time when it wouldn’t be needed” was one comment in support of the community of infected and affected people. The opportunity for having dedicated time is very helpful to maintaining high quality support for people and providing them with maintained psychological wellbeing. Embedding the style of working is very important for the community. Trust is a key issue for people, particularly as they go through the Inquiry.

And so, to England. “Improving Access to Psychological Therapy” (IAPT) was used as an easy door opening topic to give the English a bit of a positive message to what has otherwise been a yawning gap when it comes to contaminated blood psychological support. Counsel allowed the English witness to rabbit on about IAPT with rhetoric about stats and achievements at a policy, planning, and management level. After five minutes of jabber, there had been no mention of a service for infected and affected people. The numbers were numb as they rained down from a crows nest looking down on people, like ants. So, having a big strategy was either being presented as a panacea or the excuse for lack of progress on specifically supporting infected blood people. It was neither. Covid even got a mention as a negative impact on progress being made.

At last, England got to what it was attending to speak about. The £900 available from EIBSS was mentioned as a resource to access psychological support if a person did not want to go down the generic IAPT route. Given what had just been said about the importance of a specialist service, why would anyone choose a one-size-fits-all outfit that is only meant to cover “moderate” psychological issues. The options previously presented years ago to address the needs of infected blood patients were mentioned. The English witness began to struggle and had to refer to papers but could not find solace. The Chair entered the fray by quoting the senior official, William Vinal(?) where a service like those elsewhere had been presented. Then nothing happened. Covid was levered in again as an excuse for not acting. Mention of a number of meetings were cited as reasonable progress, which nobody believed. EIBSS has added to its service … oh really. Progress is being made … ditto. The Inquiry would have to ask the Department of Health about the current situation. Experts appear to be advising the DH, but there was no detail to report. Additional research has been commissioned, but again the witness could not say who was doing it, if it had started, or anything else other than saying that the Inquiry would need to ask the DH. Counsel noted that the Inquiry had written to the DH and it had said it would respond in due course. Why were they not in place to answer the question? the cowards.

If the English representative witness was not punch-drunk under her veneer of civil servant non-answering after the onslaught of questions from Counsel which she could not answer or justify, then she must have had prophylaxis against excessive blood loss. She was like a lamb to the slaughter, a sacrificial offering from a Government who clearly don’t care enough to do the right thing.