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Stanford woman praises innovate care for those with Liver disease

A COLLABORATIVE team from St. Luke’s Hospice and Basildon and Thurrock University Hospitals (BTUH) has been selected by the Health Foundation, an independent health care charity, to be part of its £1.5 million innovation programme, "Innovating for Improvement".

The second round of the Innovating for Improvement programme is supporting twenty-one health care projects in the UK with the aim of improving health care delivery and/or the way people manage their own health care by testing and developing innovative ideas and approaches and putting them into practice.

The initiative team from St. Luke’s Hospice and BTUH is aiming to improve care for people with Advanced Liver Disease, the project will implement a shared care pathway between the acute hospital and hospice setting. It aims to ensure early and timely access to support services and interventions, and increase access to hospice-based clinical and therapeutic services. There is growing national recognition that people with advancing liver disease have limited access to palliative care support despite there being a need to manage complex and difficult physical and psychological symptoms.

Gill Clayton, Programme Manager from the Health Foundation said, “We are very excited to be working with such a high-calibre of teams, who all have great innovative ideas. As an organisation we are keen to support innovation at the frontline, therefore I am pleased that we will be able to support these ambitious teams to develop and test their ideas over the next year.

“Our aim is to promote the effectiveness and real impact of the teams’ innovations and show how they have succeeded in improving the quality of health care, with the intention of these being widely adopted across the UK health service.”

The programme will run for fifteen months and each project will receive up to £75,000 of funding to support the implementation and evaluation of the project.

Over the course of the programme the team will develop its innovative idea and approach, put it into practice and gather evidence about how the innovation improves the quality of health care.

Following a small pilot project, an example of the success being developed by the innovating new care pathway approach has been experienced by Molly Smallman:

Molly’s story:

Molly, aged 70, lives in Stanford le Hope with her husband David, she has 3 children and 5 grandchildren. Molly worked as an administrator, when on the verge of retirement her health took a turn for the worst. What initially started as back pain led to her having to give-up work and over the past 20 years she has battled with several complex heath issues.

Molly recalls:- ‘’Over the past 20 years I have developed complex health issues which has now left me with amongst other conditions chronic liver disease and hearth failure. Despite having had amazing support from my GP surgery, Basildon Hospital as well as my family, church and friends about 2 years ago I reached a very low point in my life. I am used to coping with being ill and the restrictions it places on my life but at this particular point I was just so tired and frustrated! Despite being ill for so long I had always been an independent person – able to cope with my housework and getting on with life. But it now seemed all too much for me, I became withdrawn and started to feel stressed, I didn’t want to do anything, becoming quite insular and depressed. This also had an effect on my family because they didn’t know what to say or how to help make things better for me. I had lost all hope and mentally couldn’t take any more I had in reality become a recluse not going out or only going out when I really had to.

On one of my regular visit to the Liver Clinic at Basildon Hospital Sarah asked how I would feel about spending some time at St. Luke’s Day Hospice. Although being surprised at her suggestion I was at such a low ebb that I would have said ‘yes’ to anything that might have improved my situation. My family and friends were equally surprised and shocked when I explained that the aim of me going to St. Luke’s was for the Hospice to help me feel better not because I was going there to die!

I didn’t quite know what to expect on my first visit as I walked in – what greeted me, together with a great cup of tea, was a very welcoming, relaxed, friendly and cheerful atmosphere. I was made to feel like a ‘special person’ by everyone, nurses, volunteers and other patients, nothing was too much trouble. Although at first I found it all a bit strange and different I soon found myself enjoying the day, joining in with others around the craft table, listening to their life stories and sharing some of mine.

There was also plenty of time during the day to speak with nurses and to have specific time with Virginia, who had time to explain and offer advice and support about how to manage my medication and condition. I received the knowledge and learned how to cope better both mentally and physically. Not everyone who attended the Day Hospice had the same illness as me, some had cancer and others Motor Neurone disease or a variety of other illnesses but we all shared a common bond at the Hospice, and over the weeks on my regular Tuesday visits we became friends laughing and joking together. Some people just come in and sit reading, others knitting or just chatting, we all sit together at lunch time where a lovely home cooked meal is provided then in the afternoon after a short rest there were other activities and support sessions.

I really looked forward to my visits and gradually I found myself smiling again and not feeling so miserable – my family started to see a change in me. I had something to talk about with them other than how I was feeling, I was less miserable and not so ‘snappy’ with them all. I started to have meaningful conversations about what I could and couldn’t manage to do and didn’t worry so much about what I couldn’t do instead enjoying what I could. The Hospice, although not being able to cure my illness has enabled me to cope with it. I am now aware of my own limitations and the Hospice has taught me how to manage what energy I have, giving me confidence and a not so stressed an outlook on life.

Although having now finished my weekly sessions at the Hospice I attend a monthly liver support group at the Hospice which has enabled me to ‘keep on top’ of my condition, reminding me of all the coping strategies I have learned and giving me further information about how I can help myself as well as developments in care and support that is available to help me further. There have been times where I have mentioned a ‘change’ in my condition and the Hospice has been able to advise me on what to do which has in turn saved me from worrying further or visiting my GP. I know, as do my family, that we are able to contact the Hospice at any time if anything is worrying me or if I ever need support or advice. My experience at the Hospice has turned my life around. I am so grateful I was referred to them and am delighted that this award will enable more people to be helped and supported so that they can benefit in the way I have.

The team will be led by Virginia Campbell, Specialist Nurse Practitioner and Sharon Quinn, Supportive Car and Development Manager at St. Luke’s Hospice

Virginia said ‘’We are delighted to have won this prestigious award. The project will enable us to deliver improved care and support in conjunction with the hospital for patients and their families with Advanced Liver Disease. It is also hoped that due to the innovative nature of this project that this model will not only help our local community but that it may shape care for liver patients nationally’

Sarah Tarff, Liver Nurse Specialist at Basildon University Hospital added:

This is an amazing opportunity for patients with Advanced Liver Disease as it will allow them to access a range of support to enhance their well-being. Patients tell us how much they value the support that comes from meeting other patients in a similar situation to themselves.”

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