The contaminated blood disaster affected an entire generation of people with bleeding disorders and their families. We estimate that there are up to 532 families with bleeding disorders in Scotland who have lost someone or have a survivor.
We believe that the as well as the physical impact of the disaster there has been serious and long term psychosocial damage caused to those infected, there partners, parents, children and loved ones. People tell us about problems with self-esteem, stigmatisation and in many cases intense stress caused by the pressure of keeping it all a secret. In some cases people have developed problems with trust, especially of those in authority while other have symptoms akin to post traumatic stress disorder. These problems have cause relationships to break down or to be hard to form in the first place. Some people have sought emotional crutches like alcohol or other addictions.
With the Scottish Government, we have established a pilot project which will test different models for trying to support people as they deal with these issues. We are also building links with some of the support organisations and projects listed below to help people find the help they need.
New Psychological Support Service at Edinburgh Centre
Recent campaigning by the Haemophilia Scotland community for increased psychological support across Scotland has resulted in funding being made available by the Scottish Government. This money is being used to fund a 2 year pilot project in the Haemophilia Centre in Edinburgh. During this time it is hoped that the benefits of additional psychological support to patients with inherited bleeding disorders and their families will be demonstrated. It is hoped that if the pilot project is successful, psychological care will be made available to patients across Scotland.
Introducing Gráinne and Nadine
Gráinne and Nadine head up this new service, they can offer psychological support and talking therapies to all patients with inherited bleeding disorders, young and older, and their families, including families of those who received Infected Blood products.
Alongside the physical and emotional demands for the people who received infected blood products, great demands were placed upon their partners, parents, children and loved ones. Some people describe becoming more involved in caring for their loved one’s physically and emotionally, which can be stressful. You may find it useful to speak to somebody about your experiences of caring for a loved one. The Psychological Support Service, based in the Edinburgh Haemophilia Centre, can provide space to explore your feelings about this or help with stress management techniques.
Sadly many of those with haemophilia who received infected blood products have now died. Grief can affect us all in different ways. Some people describe feeling shocked, numb, exhausted, down or angry following the loss of a loved one. These emotions can feel overwhelming or difficult to manage and can impact upon your daily life.
You may find it useful to speak with somebody about your experience of supporting your loved one as they became more unwell or about your experience of grief. The Psychological Support Service, based in the Edinburgh Hemophilia Centre, may be able to offer help and support. More details on this service can be found here. If you would like any further information about the service or are linked with the Edinburgh service and would like to arrange an appointment, please call the Edinburgh centre on 0131 242 1270’.
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Hepatitis
The Skipton Fund – a UK-wide ex gratia payment scheme to make payments to certain people who were infected with Hepatitis C through treatment with NHS blood or blood products prior to September 1991 and others. Skipton is funded by the UK Department of Health and the Scottish Government.
The Caxton Foundation – a charity that provides financial and other assistance to individuals who have been infected with the Hepatitis C virus as a consequence of receiving NHS treatment using contaminated blood, blood products or tissue. Caxton is funded solely by the UK Department of Health.
HIV
The MacFarlane Trust – Provides support people with haemophilia who were infected with HIV as a result of contaminated NHS blood products, and their spouses, parents, children and dependants. The MFT is funded by the UK Department of Health.
HIV and Hepatitis
CJD