Optimising Hep C Support

​For further information about “OHCS”, please contact Phil on 07812 479332 or phil@hepcpositive.org.uk



Support

Hep C Positive has developed a comprehensive support programme concerning all practical and emotional aspects of managing and coping with the effects of the Hep C virus.

This programme is aimed primarily at patients but we have also found it to be a great help to concerned others including partners, carers, friends, family and health & social care professionals.

We would be very happy to bring this programme to you and your area.

The flagship for the Hep C Positive project is the Swindon Support Group. The support group has been running since October 2011 and has proved to be one of the most consistent and reliable groups of its kind in the UK.

Run by an enthusiastic and dedicated nucleus of patients and volunteers, it continues to go from strength to strength. At the time of writing (summer 2014) the group has been visited by over 180 people. If every current group member attended at the same time, we would have approximately 25 people visiting us each week. As it is the group’s average attendance is between 10 and 12 people every week. This is without doubt the most important aspect of our support work. We find that anyone concerned with this issue, that regularly visits the group, is definitely able to cope better. It’s the love, the grace, the dedication and the IDENTIFICATION which helps us. We experience laughter, tears and anger together but as in any strong group of people, the feelings are absorbed and disseminated amongst us and we all go home every week feeling a little less burdened.

We meet weekly because the generally consensus amongst us was that people needed to know the group was being held every week. This consistency and reliability has again proved most valuable.

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Active Support Work

All the additional support provided emanates primarily from the group's experience, including such things as:

  • pre- and post-test / treatment advocacy and counselling
  • sign-posting to other relevant support services
  • liaising between other relevant support services and professionals
  • monitoring progress and maintaining contact
  • addiction recovery support
  • treatment pathway management assistance
  • promoting support group attendance
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Kelvin Marshall

My experience as a member of the Swindon Hep C Positive group.

My name is Kelvin Marshall and I’m currently living with Hepatitis C having been diagnosed in February 2010. My route into the hospital system and treatment programme was fairly rapid and in the last 4 years I’ve undergone 2 unsuccessful attempts at treatment. The virus didn’t respond at all to the first attempt with Ribavirin and Interferon in July 2011, nor the second 12 months later with the same 2 drugs plus Telaprevir. My body and vital organs could not withstand this new triple combination and I was removed from the programme after 9 weeks and urgently admitted to hospital to stabilise my poor condition.

During all this time the Hep C virus continued to attack my deteriorating liver and in April 2012 a tumour was found. This resulted in a liver transplant at Birmingham Queen Elizabeth University Hospital in December 2012 with a second transplant 3 days later after the first one failed. Oh happy days.

It was just after my failed second attempt at treatment and before my double transplant that I accidentally discovered the existence of the Swindon Hep C Positive support group. I had many pre-conceived notions and attitudes towards groups (all negative) and thought heaven forfend there should be any group ‘hugging’! But I was intrigued and went along to attend my first meeting.

I’ve been in regular attendance ever since, the diversity and accumulated knowledge of the various group members has certainly increased my own understanding of the disease and motivates me to help others to cope with it.

On a personal level I’ve just started my 3rd course of treatment in what I’m sure will be a successful attempt to finally eliminate Hep C from my body. The new drugs now coming onto the market have the fanatical liver consultants at Birmingham hospital dancing down the corridors with excitement. They’re confident that this new generation of drugs will be more successful at clearing the virus than current traditional therapies, but also with less ‘toxic’ side effects.

In the wake of all this positivity I feel unable to remain aloof from their enthusiasm and can only continue to feel extremely confident about my own prospects. The thought of getting my health (and therefore my life) back is a seriously powerful motivating factor for me, and this feeling is being constantly reinforced by attending the weekly Swindon Hep C Positive meetings where I regularly come into contact with fellow group members who have successfully cleared, and continue to clear this pernicious virus.

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Paul Exton

I was diagnosed with Hepatitis C genotype 1 about three years ago.

It’s seems that I must have been exposed to the virus about 40 years previously when as a young person I experimented with different drugs and several times that had included intravenous drug use.

For years I did not have any idea that I was infected with this virus even though i would get tired a lot and feel weary.

It was having a blood test in later years that exposed the virus. It was a shock finding out especially that my liver had been damaged, scarred and had become cirrhotic from the Hep C virus.

About a year after diagnosis I was put on triple therapy treatment under the John Radcliffe Hospital in Oxford. The treatment was tough going but after 48 weeks the virus was non detectable.

Six months later it was still non detectable which meant I had cleared the virus. I can only thank the good nursing staff at the John Radcliffe Hospital, and the Hep C Positive support group in Swindon, who were there to see me through some bleak times when I was on treatment.

I feel very fortunate to have cleared the virus and look forward to seeing some better times ahead.

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Richard Turner

The Hep C Positive group gave me equal measures of support and information in a safe environment when I need it most. I took treatment for the second time and, this time, cleared the virus.

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Swindon Support Group

​HEP C POSITIVE SWINDON SUPPORT GROUP MEETS EVERY MONDAY at BROADGREEN COMMUNITY CENTRE, SALISBURY STREET, SWINDON, SN1 2EN at 6.30pm.

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Education

Hep C Positive is able to offer any of the items published on these website pages as workshops or presentations at conferences and focus groups for patients, professionals or any other organisation or group that has an interest in learning about or promoting the awareness of and education about Hepatitis C. Interested parties can contact us at phil@hepcpositive.org.uk

Education: Information

Including:

Up to date information and statistics about Hepatitis C in the world, in the UK and in any other area in particular where this information may be requested, presented or otherwise delivered. Power point presentation, World Health Organisation and Public Health England figures, myths and facts about HCV and Question and Answer session(s).

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Education: Hepatitis C Management and Treatments

Including:

Focusing on the patients’ practical and emotional needs. Especially helpful for all health and social care professionals, carers, patients and concerned others. Understanding the illness, diet and lifestyle choices, treatment options, adherence to treatment regimens, myths and facts about HCV, advocacy, encouraging mutual aid, suggested training.

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Peer Support: Patient, Peer and Carer Experience

Including:

Talks from patients and carers willing to share their various experiences with concerned others. Those who have cleared HCV, those who are living with HCV, carers who help or who have helped their HCV positive partners. Encouraging discussion and question and answer session(s).

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Peer Support: Mutual Aid/Psycho-Social Support

Including:

The essential importance of the Peer Support/Mutual Aid Group, starting and then perpetuating a peer support group, psycho-social mutual aid, encouraging mutual aid, sharing of up to date and relevant information. Feedback, discussion and question and answer session(s), suggested training.

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Swindon Support Group
Swindon Support Group

Curry Night Out
Curry Night Out

Xmas Party 2012
Xmas Party 2012

Xmas Party 2012
Xmas Party 2012

Xmas Party 2012
Xmas Party 2012

Kelvin Marshall
Kelvin Marshall

Paul Exton and Richard Turner
Paul Exton and Richard Turner