A psychology team specifically for the service has now been established. From January 2020, individuals registered with WIBSS, their family members and bereaved family members can access psychological assessment and treatment concerning the emotional difficulties of being given and living with a diagnosis of Hepatitis C and/or HIV. The team are aware of the historical context and have experience of working with the emotional difficulties that have occurred as a result. A hope is that by offering a specialist psychology service there will be some acknowledgement and recognition of the physical and psychological complexity and the impact on quality of life and relationships.
Following a referral to the psychology team an assessment appointment will be offered which will be an opportunity to talk through the previous and current emotional difficulties and consider options for treatment going forward. The psychology team are able to offer a telephone conversation before and after referral if there are any questions or concerns about what to expect from a psychology assessment and/or treatment.
Please find the referral form here.
The team can be contacted on 029 20196141, or by email: wibss.wellbeingservice@wales.nhs.uk.
The Emotional Impact of the Infected Blood Inquiry
From talking to people who access our service, the ongoing Infected Blood Inquiry was welcomed as a platform to uncover the truth and understand the circumstances surrounding the delivery of contaminated blood and blood products. The Inquiry, as a focus for some, has been a helpful place to come together to express feelings of loss, anger and helplessness (to name but a few). This has exacerbated trauma and a strong sense of injustice as people relive difficult memories and experiences from the past.
We appreciate that the desire for justice has been a hope for many and realistically, the outcome of the Inquiry may not meet everyone’s expectations. The WIBSS Psychology and Wellbeing Service, therefore, is considering what aspects of support you feel you might need once the Inquiry ends, and community opportunities, with those who share similar experiences, diminish. If you would like to talk to one of the team about your feelings in relation to the Infected Blood Inquiry and are registered with the Wales Infected Blood Support Scheme (or are a family member of someone registered with WIBSS) then please feel free to contact us on: 029 20196141, or by email: wibss.wellbeingservice@wales.nhs.uk.
If you are interested in watching the evidence session that Dr Coffey attended; it is available via the IBI website Transcript – London – Friday 11 November 2022 (Keith Carter and Specialist Psychological Support) | Infected Blood Inquiry
Not sure if this is for you? Read about the experience of other people who have accessed support.
Testimonial 1
My experience with the psychological wellbeing programme has been very positive and I would recommend it to anyone who is suffering anxiety and stress from having received tainted blood and blood products due to negligence. It is not a quick fix for someone like myself but it has helped me deal with some difficult issues and is helping me still but there is light at the end of this long tunnel.
Testimonial 2
A friend suggested that I contact WIBSS as he was aware that attending the public inquiry at Cardiff had affected my health. I had tried counselling via my work place but found that it was time restrictive ie six sessions and was not that helpful. Eventually I couldn’t cope with my emotions so I contacted Wibss and am so glad I did. I now have help and support from my counsellor who not only has great insight of the Infected Blood issue but also appreciates the that our suffering has been endured for a considerably long time and so it will take time to be able to overcome the difficulties. This counselling is tailored to suit my needs and I don’t feel pressured to make a fast recovery. I have made progressive steps and also taken retrograde steps but I know that no matter what I have the full support and encouragement of my counsellor which gives me strength to keep going. Every session leaves me feeling more able to cope with my issues. COVID 19 has impacted on my mental health however once again the counselling has been tailored to suit my current needs. I would advise anyone who is thinking about seeking counselling to approach Wibss. This counselling is so different it is helpful, supportive and adapts to the individual.
Testimonial 3
I’m a normal person, I live a normal life, but am I? Sometimes I find myself crying myself to sleep and I hide it, I’m in the car and the tears just come from nowhere, why do I feel so so sad and alone when I have so many people around me friends and family.
It hasn’t always been easy not just the bad blood and everything that brings with it but many other things that a person shouldn’t cope with endure or experience, but I’m a strong person and I can cope, I’m the one everyone needs to help them, and then one day I can’t anymore and I need someone.
It’s not easy to get help it’s not easy to ask.
Wibss is there, I just filled out a form a couple of years ago to say how I felt and they came to help me. Just having someone to talk to about something or nothing is a safety net, I don’t know why but it is, I look forward to the calls, it helps me it could help you too.
Testimonial 4
“The treatment I received for hepatitis C had a devastating effect on my life. I found that talking to the counsellor was reassuring and helped me understand some of the emotional and psychological issues that I have been dealing with. In particular talking about some problems I have had with my relationships with my family and friends has enabled me to put things into context and enabled me to improve things. Talking to someone outside my circle has been very helpful. In addition some mindfulness excercises that she introduced me to have helped me with my sleeping difficulties”
Testimonial 5
The service has been helping our son ,who has been struggling with issues relating to his dads health, giving him ways to help cope with this and other anxiety problems he is facing .He is finding the sessions really helpful.
Testimonial 6
My name is Margaret and I have been asked by the team at WIBSS to say a few words about the wonderful well being and support service they provide for those of us living with the emotional turmoil of contaminated blood/products.
Out of the blue a counsellor from the wibss Psychology and Wellbeing team phoned me in Spring 2017 asking if I would like to come and see her, a bit reluctantly I agreed. We spoke for some time as to what I could expect from such a meeting and I felt relieved that I had made the decision, I was at my lowest ebb emotionally and desperately in need of help
At our first appointment I was so worked up I felt like walking out and never going back, the thought of talking about my feelings to a complete stranger terrified me I felt sick to my churning stomach. The counsellor by nature of her professionalism and innate sensitivity relaxed me enough to stay a little longer and hear what she had to say. Later on I began to think that maybe it might help me on the road to recovery should I persevere.
That road has had many twists and turns, during our counselling sessions I have cried, become aggressive screamed in anger and frustration argued and sulked, just about every negative,self destructive emotion I live with as a the result of infection came out in spades.
Through it all the counsellor remained constant, her guidance and unequivocal support never wained she gave me the security of care something I had felt myself unworthy of after years of the cruel judgmental attitudes from many of those involved my health projects prior to and after my Hepatitis diagnosis.
After regular telephone meetings with the counsellor (as I live in Cornwall), I am slowly understanding some of the psychological damage caused by my infection ie. it was out of my control and not my fault, that’s a huge step forward.
The counsellor is working on my acceptance of what cannot be changed and adjust my thinking to live with the damaging past events and manage them successfully enough to enjoy a more reliable lifestyle. That may sound like psycho-speak to us lay persons especially as our pain has been overlooked for so long perhaps, as I once did we lose faith in any honest and constructive help but it is an achievable process that I can personally recommend could do the same for any one of you.
There is a long way for me to go but as testament to what as been achieved so far I can now speak more easily about my struggle and will be eternally grateful to the WIBSS for setting up their well-being/support service.
A short account of my life with Hepatitis C.
In 2013 after moving from Wales to Cornwall I had a call from my local GP clinic to come in to discuss results of a routine blood test taken a few days earlier, I had a prearranged visit to talk about my increasing depression and other bits and bobs so it was dealt with at the same time.
First and foremost I was questioned about my alcohol consumption and it was suggested that it had possibly caused cirrhosis of the liver, I needed further tests and a consultation with a liver specialist was to be arranged. then as an afterthought she asked the original reason for my asking to see her.. I was completely stunned and burst into tears hardly able to take it all in or speak. I mumbled something about my depression with the response it was far easier to treat than the liver problem, she strongly advised me to cut back on alcohol or if at all possible abstain, then sent me on my way…..
My husband was appalled and doubtful of the diagnosis he wanted us both to revisit the Doctor at once to register a complaint at the way this had been handled but there was no way I could ever face her again apart from being terrified at the prospect of liver disease I felt belittled and ashamed that I may have caused Cirrhosis by drinking too much red wine, I was inconsolable.
Eventually I was given the Hep C diagnosis although I had never heard of it before, I was overjoyed that it was not Cirrhosis. A few days later I met with a liver consultant a who immediately intimidated me by his abrupt bullying manner, he explained nothing of my condition , questioned me aggressively on my alcohol intake, did a quick examination , advised I start treatment within six months and for me and my family to be tested for HIV, that was it. I was no better informed and in bits.
Thankfully I found the Hep C Trust, London online, I phoned them immediately and through my uncontrollable sobbing told them my story. They were amazing, but sadly had to tell me about contaminated blood and that the reason for my infection was down to several blood transfusions I had had in the seventies after a serious road accident. I couldn’t believe it, I had been in the hospital system for over forty years no one had ever mentioned the risks involved with the transfusions or checked for infections later on. It was a major bombshell one I can never ever get over.
Apart from the initial meeting with my Hep nurse there was no further mention of the cause of my virus it was as though it hadn’t happened or didn’t matter I was devastated.
For the next three years or so I was on/off horrific treatment suffering extreme physical and mental trauma.
In 2016 after I cleared the virus and was finally free of the hospital visits when I reached a severe emotional crisis, I started having physical shakes, nausea and dizziness, my mind was taken over with constant negative voices and when I could manage a few hours sleep terrifying nightmares woke me up, I lost my appetite was afraid to leave my home or answer the phone. I finally approached the NHS for help and after many months of waiting had a couple of appointments with a counsellor who really didn’t do much as she had never heard of the contaminated Blood scandal, it was all hopeless I couldn’t see a way forward.
For a few more months I sunk further into a black void sometimes hoping I would never wake up from sleep again, there was nothing left for me. I was wrong, one telephone call from the WIBSS well- being team give me hope and strength I needed to pick turn my life around with their total support.
Thankfully they are there for us all.
Testimonial 7
I first decided to utilise The Wellbeing Service at WIBBS about a year ago. I have benefited enormously and have welcomed the support and reassurance that I have experienced during the last twelve months. It has been a difficult year for all of us especially so if you have been feeling isolated in your own home. Added to this has been The Infected Blood Inquiry hearings, which may have transported many of us back to very traumatic and heartbreaking times recreating difficult memories.
The Wellbeing service has provided me with a crutch to lean on and a safety net giving me the support that I have needed for a very long time. I wish that this service had been available thirty years ago when I lost my Husband to AIDS.
I would encourage anyone to use this service which is confidential. Use it and don’t suffer alone help is available to you.
Testimonial 8
I have been working with a counsellor from WIBSS for well over 18 months now to help with me come to terms with receiving contaminated blood back in 1990, although not diagnosed until 2017. Since working with the counsellor to help me understand and come to terms with my Hep C diagnosis, I now feel I am moving forward with my life, I finally feel that there is a future for me, I have my anxiety (which I have never suffered with prior to diagnosis) under control, got a new job and I am now looking at a new career. This I never thought possible. The counsellor is such a caring, considerate and empathetic person, who always puts her clients needs at the forefront of each session and helps me find the most realistic approach for me. I do truly feel that without the counsellor I would still be sat in my bedroom hiding away from the world. I cannot thank her enough.
Testimonial 9
Having been referred to the WIBSS team my initial worries were addressed by a helpful and very proactive team; I was kept informed of changes regularly and staff were always helpful when I contacted them.
The counselling offered by WIBSS came quite possibly at the lowest point of my life. I was quite nervous and unsure as to what the counselling process could offer me and how it would help me improve my mental health when I first started this process.
The counselling service helped me on the path to address my feelings and how I could attempt to improve my mental health. The WIBSS counselling and wellbeing service was very positive, the counselling itself has helped me on the steps to find a way to address the mental health issues that I was experiencing. The regular meetings were essential to help me on this journey and I felt that if I needed extra support, that this was only a message away. This provided me with a safety net that I could rely upon and despite my initial concerns I would recommend the offer of help.
I cannot thank my counsellor enough, as I have been guided on this journey in a kind, understanding and supportive way. I have always felt supported fully, it has been a very difficult and painful time and I am grateful for the help provided by the WIBSS service, it may not be the end of my journey, but I feel it has certainly helped me begin to come to terms with the situation and the enormity of what has happened.
COVID-19 (CORONAVIRUS)
The spread of COVID-19 (Coronavirus) is a worry for us all and can adversely impact on your psychological and emotional wellbeing. With the requirement to self-isolate, it’s really important to take care of yourself, as maintaining good mental wellbeing is just as crucial as maintaining good physical wellbeing. We have attached some resources here that might help you during this difficult time. We are still able to provide telephone counselling; if you would like to access support, please complete the online referral form and email to wibss.wellbeingservice@wales.nhs.uk.
There are some links below that you may find helpful.
