e r ' u o y e s u a ! o Bec o t t n a t r o imp
t r o p p su rers a c r o f Total support for patients and families Clinical - Financial - Practical - Emotional - Spiritual
e m o c l We Whether you are caring for someone around-the-clock or for a few hours a week, in your own home or for someone at the other end of a motorway – being a carer can have a huge effect on you, your life and your plans. Caring for each other is simply part of being human. Carers hold families together, enabling loved ones to get the most out of life, making an enormous contribution to society and saving the economy billions of pounds. Yet many of us are stretched to the limit – juggling care with work and family life, or even struggling with poor health ourselves. Here at Phyllis Tuckwell we recognise the important part family members and friends play in caring for their loved ones and want to help and support you in any way we can. This booklet shows you all of the services we are able to offer carers and how to access them.
u o y k n Tha
2
Claire Delaney Patient and Family Support Team Manager
In this booklet 2
Welcome
4
General advice & Individual Emotional Support
5
Emotional Support for Children & Spiritual Support
6
Benefits & Entitlements Advice & Advice on Care Services
7
Carers Support Groups
8
Wellbeing Workshops
9
Complementary Therapies & Pampering Days
10
Brush with Art & Open House
11
Hospice Home Support
12
Frequently Asked Questions
14
Carers Assessment 3
General advice on issues regarding the person you care for There is always someone you can talk to about the person you care for, whether they are at home, on the In-Patient Unit or attend Day Hospice. If you are not sure who to contact ring the main Hospice number on 01252 729400 and ask to speak to the Medical Secretaries office. They will then put you in contact with the right person.
Individual Emotional Support One-to-one emotional support is a safe and confidential space for those who have worries about the situation they are in, but have no one to talk to about it. This may be because they don’t want to burden friends or perhaps because talking to family members may be difficult. Individual Emotional Support can also help with developing coping strategies if there are particular struggles you find difficult to deal with in your caring role. It can help if you just need to offload to someone or need some emotional support along your journey. If you would like to access support please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
“Claire listened about how I felt”
4
Emotional Support for Children For children and adolescents of all ages, the premature death of a parent or significant loved one can be a traumatic experience. It sets them apart from their friends, many of whom will not have had an experience of death in their lives yet, and places a burden of emotions, expectations and responsibilities on the young person’s shoulders which they are not yet ready to manage. Research demonstrates that how they experience this loss will influence how they form future relationships, and anticipate and experience loss and endings throughout the rest of their life. Therefore, it is important that we do not overlook the need to prepare and support these young people for what lies ahead. Here at Phyllis Tuckwell we have a range of services to help support and guide your child, sensitively and age appropriately, through this challenging and difficult experience. If you would like to access support please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
Spiritual Support Caring for someone can be very draining, not only emotionally but spiritually, as spirituality is about your intimate self, your identity and your connectedness, which can sometimes get very lost when your focus is on caring for another. The Chaplaincy team is here to help restore the balance and help you find yourself and feel connected to life again; whether that be through listening, prayer, communion, or simply by being a presence alongside you. If you would like to access support please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
5
Benefits & Entitlements Advice Phyllis Tuckwell offers patients and carers a ‘Citizen Advice Bureau’ type service, making sure you are receiving all of the appropriate welfare benefits which you are entitled to. We will guide you through how to initiate new claims and make sure you have the correct documentation to ensure a positive result. We can also help with accessing items such as disabled persons car badges, Carelines, alarm monitors, help with gardening and cleaning agencies. We are also able to signpost you towards legal services which can help with matters such as making/updating Wills and Lasting Power of Attorney. If you would like to access support please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
Advice on Care Services Accessing support for the person you care for can be a minefield, with lots of different organisations offering different services. The social work team here at Phyllis Tuckwell can offer advice on what can be accessed, for example a carer coming in during the day, 24 hour livein care at home or nursing home care. We can guide you through the different ways these services could be funded either privately, by Social Services or through the NHS Continuing Healthcare route. We will work with you to find the best care possible. If you would like to access support please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
6
Carers Support Groups These groups are specifically for anyone caring for someone living with a terminal illness. They are based at the Beacon Centre in Guildford, where a range of practical and psychological supportive sessions are facilitated by a health care professional, with invited guest speakers. Carers do not need to be known to Phyllis Tuckwell in order to access these sessions. These groups meet on alternate Mondays from 10.30am to 12.30pm. Parking is free. You do not have to attend every session, but can instead choose to come to those which interest you. These sessions are intended to create some time space away for you as an individual, from your caring role, and in a supportive environment. They will provide you with practical strategies which will help you in your role as a carer. They will also provide you with an opportunity to share your experiences and feelings with other carers, and will enable discussion and information sharing. If you are interested in attending please call 01252 913040 to request a timetable of planned sessions. Please see our website for more information.
7
Wellbeing Workshops Wellbeing Workshops are a series of group sessions for both patients and carers, to help people cope with their symptoms in day-to-day life. The groups offer mutual support as those who attend will be with others facing the same problems, they help participants understand symptoms and find practical ways to manage them better. Topics include; coping with fatigue, how to get a good night’s sleep, managing breathlessness and exercise, dealing with stress and anxiety, and learning complementary therapy techniques to use at home. We also run short relaxation sessions where you can learn a variety of practical techniques which you can apply ‘in real life’. If you are interested in attending the wellbeing workshop please contact the Occupational Therapy Department on 01252 729417
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Complementary Therapies Complementary Therapies are gentle, non-invasive treatments which are available to both patients and carers. They work by helping to restore balance emotionally, physically and spiritually, which is known as holistic care. Helping a person to relax and creating a feeling of wellbeing can help with physical problems such as insomnia and muscular aches and pains. Carers’ clinics at the Hospice are held on a Tuesday, 2.30-5.30pm, in the lovely, peaceful Lavender Room. A choice of therapies are offered such as Aromatherapy, Reflexology, Indian Head Massage and Spiritual Healing to help carers relax and let go of tensions and worries. We also offer sessions to both carers and patients on a one-to-one basis, to show carers how to use massage for relaxation and to help with particular problems. Please note that carers may also be seen post bereavement. Appointments for therapies either at Phyllis Tuckwell Hospice Farnham or the Beacon Centre Guildford should be made through the Complementary Therapies Team on 01252 729437.
Pampering Days We also offer Pampering Days to carers once or twice a year in our homely Dove Lounge. These are either whole day or half sessions where carers can enjoy therapies and beauty treatments as well as a lovely lunch. Please watch out for dates for the next Pampering Day.
9
Brush with Art This is an informal art group for patient and carers to attend together. It is run by volunteer artists on a Monday afternoon between 2pm and 4pm from mid-February until early December. It offers an opportunity to spend quality time with the person you care for and is a welcome distraction from the stresses imposed by a serious illness. It gives you time to explore your creative side, with an emphasis on fun and relaxation, rather than on perfecting technique.You’ll be surprised at what can be accomplished with the right support and encouragement. If you are interested in attending ‘Brush with Art’ please contact the Day Hospice on 01252 729411
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Carers are welcome to drop by (no appointment needed) every Tuesday (excl. Christmas/New Year), between 2pm and 4pm. Open House is held in the Dove Lounge and provides the perfect opportunity to find out more about how our Day Hospice operates and which services are available to patients and carers.
10
Our Day Hospice provides a welcome break for carers, although weekly visits may be time limited depending on individual circumstances.
Hospice Home Support (HHS) Looking after someone who is ill can cause real anxiety and stress, and can be lonely and tiring too. Hospice Home Support (HHS) helps patients and carers to cope at a difficult time in their lives by providing a volunteer who will visit for up to three hours a week, offering company and practical support. Our team of trained volunteers can help you in the following ways: • • • • • •
providing sitting companionship - company for patients which allows you a few hours off shopping with or for patients taking patients on outings helping with children accompanying patients on hospital visits ironing and gardening
Our volunteers will recognise when to ‘do’ and when to listen, recognising the changing needs and sensitivities of the situation. The service is available free of charge to anyone under our care. If you are interested in accessing Hospice Home Support please contact The Community Team on 01252 729421
11
Frequently Asked Questions Do I have to pay for services from Phyllis Tuckwell? No, all services offered by Phyllis Tuckwell are free. As a charity we are dependent on the local community for their generosity and financial support. We only receive 20% of our funding from the NHS/Government so we have to raise over ÂŁ20,000 a day to provide all our services. If you would like to make a donation, please ask a member of staff, or visit our website.
What if I do not have transport to get to the Hospice or Beacon Centre? We would always ask that you try to find a family member of friend to bring you, or to use public transport if you are able. Occasionally Phyllis Tuckwell might be able to arrange transport with one of the volunteer drivers. This does depend very much on the availability of a driver and is not always possible. If you would like more information please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
12
How can I be sure I am informed of all the services for carers? We send a monthly flyer to all our carers letting them know what is going on. When the person you care for was referred to Phyllis Tuckwell we wrote to them asking that we had their correct details. We also gave carers the option to ‘opt out’ of being on our carer database. When we promote a service, we write to everyone on the database so you should automatically receive an invite. If you would like to confirm that we have your correct details please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk
What happens when I am no longer a carer? If you have made friends and built relationships with whoever is in the group you have attended, you are very welcome to come back to catch up and say goodbye. We will then be in contact with details of the services we provide to those who are no longer in the caring role.
What if I cannot leave the person I care for? If you do not have a family member or friend who is able to sit with the person you care for, we may be able to organise a volunteer from our Hospice Care Team to come and sit with them. If you would like more information please contact the Patient and Family Support Team Administrator on 01252 729430 or e-mail pafs@pth.org.uk 13
Carers Assessment Caring for a relative nearing the end of life places a heavy demand on the family’s emotional and physical health. Phyllis Tuckwell recognises the potential burden associated with carers’ responsibilities and the impact this can have. You may find it useful to consider the questions below and think about whether it would help to talk to a member of staff here. We can discuss with you the things that you are finding difficult and see if there is anything we may be able to help with. • • • • • • •
14
Has your role has an impact on your other relationships? How much time do you have ‘off duty’? When did you last have a break? What extra support would improve your quality of life? What would make the biggest difference at the moment? How do you see the future? What do you find are the positive aspects of caring?
Do you have problems with:• • • • • • • • • • •
Coming to terms with the illness of the person you care for? Coping with their treatment? Having enough information about the illness and/or treatment? Sexual concerns? Spiritual concerns? Lack of social or leisure activity? Getting on with healthcare staff? Financial or legal concerns? Care and/or managing at home? Family or relationship problems? Coping with your own personal distress?
If you would like to talk through any of these issues, please contact us. We will then put you in touch with someone who can support you.
Patient and Family Support Team 01252 729430 e-mail pafs@pth.org.uk
15
In order to access any of the services in this leaflet please contact
01252 729430 pafs@pth.org.uk
July 2016
the Patient and Family Support Team Administrators at Phyllis Tuckwell:
Phyllis Tuckwell Hospice Care, Waverley Lane, Farnham, Surrey GU9 8BL Phyllis Tuckwell Memorial Hospice Ltd. Registered Number 1063033. Registered Charity Number 264501