The Family Services Team at the independent charitable hospice, St Barnabas House, is celebrating Carers Week 2016 (6-12 June) and building Carer Friendly Communities through its support services for carers in the local area.
The annual national Carers Week campaign raises awareness of caring and highlights the challenges that carers face and recognises the contribution carers make to families and communities throughout the UK. This year the campaign is focusing on building Carer Friendly Communities, which support carers to look after their family or friends, while recognising that carers are individuals with needs of their own.
The Family Services Team provides a range of support to family members and carers of St Barnabas’ patients. The team has been running a Carers Group since April 2015. The group is open to anyone looking after a patient of St Barnabas House, whether a patient’s wife, husband, son or daughter, family member or friend.
The group, facilitated by a Family Services Counsellor, aims to provide a safe and comfortable setting where carers can relax and can share experiences with others in similar situations. The group provides a space for carers to voice any fears, worries or feelings they may have in a safe setting. The group has proved very successful and carers who have attend say they feel greatly supported by sharing with others who are also caring for someone with a serious illness.
Fiona Pope, Family Services Counsellor and group facilitator, said: “When someone close to you becomes ill, it can be a distressing, frightening and lonely time, which can leave you with a sense of helplessness and loss of control. It can be difficult to talk about what is happening with friends and family, which can increase the sense of isolation.
“Most carers who use our services did not expect their circumstances to have changed so dramatically. There is a real sense of loss and grief, even before their loved one has passed away – loss of the life, freedom and peace of mind they once enjoyed being taken away. There is also a great deal of responsibility to take on, combined with the loss of care and support that the patient, now unwell, is less able to give to their family member. Our Carers Group offers a safe environment for fellow carers to meet and share their experience and understanding of a situation which leaves many people with feelings that may be hard to express to family members and friends – such as anger, frustration and a sense feeling stuck.
“It can be very difficult to plan ahead around a person suffering from a serious illness, as their condition can change hour to hour. The levels of anxiety can also be difficult for carers to manage. Many carers express a difficulty in being able to switchoff and relax and enjoy fun activities as they used to. Our group members understand these difficulties and frustrations.
“Acceptance can also be challenging, as nobody signs up to be a carer, it just happens to you. It can be a gradual process, with many people expressing that the tipping point was when they began to do something for their loved one that they can no longer do for themselves – such as make a cup of tea or drive to the shops. Here at St Barnabas House we hope that Carers Week will encourage more people to reach out for support. We also hope the campaign will raise awareness among our local community of the challenges faced by carers who do a wonderful job of looking after their loved ones whilst coping with the fear and uncertainty of their situation.”
The charity are also highlighting how St Barnabas House supports local carers, and through a powerful story about a local couple – patient and carer – they aim to illustrate the difficulties faced by carers and how St Barnabas House have supported them.
Case Study – Alison and David of Worthing (names have been changed for privacy)
David has been suffering from Chronic Obstructive Pulmonary Disorder (COPD) for five years. This is a progressive and deteriorating condition. David was coping reasonably well with his condition until a year ago when he contracted pneumonia and spent three months in hospital. Though he survived this crisis, he has since been unable to manage on a day-to-day basis as he once did. His partner Alison is now his full-time carer.
Following his return home, David was referred to the St Barnabas House physiotherapy team by his Community Nurse. The physiotherapy service offers a range of treatments, clinics and classes to help patients manage their symptoms, such as breathlessness and anxiety. While attending his physio sessions at the hospice, David made friends with a fellow patient, Peter. When David was offered the opportunity to attend the Day Hospice, at first he said no, but it was Peter who encouraged him to give it a try. David now attends the Day Hospice for a few hours twice a week and really enjoys socialising with other patients and getting out of the house. This has provided invaluable respite for his partner Alison.
Alison said: “When David attends Day Hospice I get some time for me, to have the house to myself and take a break. David likes to feel in control of the home environment, having lost a lot of control and independence over so many other aspects of his life. It can therefore feel like a real relief to have the house to myself for a few hours. I do gently remind David how important this is for me whenever he feels like skipping Day Hospice and staying home!
“After some time, St Barnabas staff suggested I may like to try the Carers Group. At first I didn’t like the idea, but then I decided to give it a go. I gained confidence after my first group and now I really look forward to attending. I don’t make it every time because you never know if it will be a good day or a bad day for David, but the support has been invaluable.
“Earlier this year I decided to take a break in my full-time career in education to be there for David, as working as well as caring had become too much for me, both emotionally and physically. This has been difficult for me, as my work was an important part of my life and my identity. The role of a carer sort of creeps up on you. It is not a situation you ask for. There is a shift in dependence which has been hard for both David and I to come to terms with. Well-meaning friends, family and even doctors really struggle to understand the challenges of the situation, particularly the emotional ups and downs. At St Barnabas the staff just get it, they just know, and it is such a relief not to have to explain!
“Looking back, St Barnabas staff were very clever and subtle in introducing both David and I to the hospice in order for us to access the help and support we needed. They really helped us to come round to accepting that help. David is a very proud man. If a nurse or doctor had suggested the Day Hospice to him too soon, he would have simply refused to go. Just the word “hospice” conjures up all sorts of fears and negative assumptions. But now David really enjoys attending Day Hospice and I look forward to my respite and attending the Carers Groups when I can make it.
“It was as if the staff knew what we needed before we did. They just guide and encourage you with patience and compassion until you are ready to take the next steps. They were always one step ahead of us, and I am just so grateful for this support that is allowing me to take care of myself as best as I can while also being there for David.
“For anyone caring for a loved one who may benefit from some extra support, from the Carers Group or otherwise, I would really encourage them to just reach out and give it a go. You will meet people who really understand your situation. The hospice teams are just so experienced. You will feel safe, supported and treated as an individual from the word go. I don’t know what the future holds for David and I but I am just so grateful to St Barnabas for helping us to enjoy the good days as best as we can.”
If you would like to find out more about the services offered by St Barnabas House for patients, carers and family members, please visit www.stbh.org.uk or www.stbh.org.uk/FamilyServices. The Family Services Team administrator can be contacted by telephone 01903 706341 or via email firstname.lastname@example.org.