inside A diAgnosis what next? Debunking myths about hospices Power of Attorney explained a hospice stay what to expect
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with a lifelimiting illness www.pwh.org.uk
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Welcome hearing the news that you have a serious illness can cause a huge range of emotions. you may feel shock, numbness, anxious, defeat or fear. everyone reacts differently and the way you feel is not right or wrong - it’s just you.
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But rememBer, help is availaBle and this guide will show you where to find it.
Co ntent s
mind matters Debunking myths care, friendship, support carers
one of those places is the prince of wales hospice. we focus on living with an illness. we want you to live as well as you possibly can, and we’ll be with you every step of the way. our support also extends to carers, family and friends too - because we know they often need our help just as much. In this guide you won’t just find details of Hospice services but all kinds of useful information for anyone in the pontefract and castleford area with a life limiting illness. please use it, share it and get in touch. we’re here to help you.
David stewart - chief executive the prince of wales hospice
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Future proof a stay at the hospice your hospice needs you
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Mind MATTERS It’s a moment you’ll never forget: hearing the doctor say you have a life-limiting illness. After the initial shock, you’ll probably be caught up in a whirlwind of appointments and practical arrangements. But are you looking after your emotional wellbeing too?
Share your feelings and don’t be afraid to ask for help. You may have family, friends, colleagues or neighbours who can help you. Ask if someone can attend medical appointments with you to help you take in everything you are told. You might prefer to talk to someone who has gone through a similar experience to you. The Prince of Wales Hospice hosts groups across the area for people with a life-limiting illness to come together to support each other, socialise and take part in activities. Call 01977 708868 to ask if this is available to you.
You can talk to people and it gives you an idea of what they’re going through similar to you. It encourages you to go through with the treatments being offered because they’ll explain that they had it, and what symptoms to look out for.
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Help with anxiety If you are having difficulty eating, sleeping or even concentrating on daily tasks, you may be suffering from anxiety. It might even cause you to feel sick, have headaches, tense muscles and hot flushes. Please turn to your GP to explore the support available to you, or one of the organisations on the right: 4 The Prince of Wales Hospice
Eating WELL Having a nutritious, balanced diet can do a lot for your personal well being. Ensuring you are getting the right amount of calories, vitamins, minerals and fluids in your diet will provide you with the energy you need. Ensure you have quick-fix of snacks and meals you enjoy available at home. For information on eating well visit www.food.gov.uk The Eat Well Guide shows how much of the food you eat should come from each food group, helping you eat a balanced and sustainable diet.
TELEPHONE & ONLINE SUPPORT As well as the Hospice, there are lots of other support organisations too. Call for direct telephone support or to find out what support is available locally for people with your illness: • Macmillan Cancer Support - 0808 808 0000 • Age UK Wakefield - 01977 552114 • Marie Curie - 0800 090 2309 and online community: www.mariecurie.org.uk • Motor Neurone Disease Association - 0808 802 6262 • British Lung Foundation - 03000 030 555 • British Heart Foundation - 0300 330 3311
www.mind.org.uk www.anxietycare.org.uk www.anxietyuk.org.uk www.pwh.org.uk 5
Debunking
MYTHS
You may be reluctant to contact a hospice - many people are. Or maybe you think a hospice is only for when your illness has progressed a lot further. But, once people find out a bit more about The Prince of Wales Hospice and how it can help, they often wish they’d got in touch sooner !
ARE THESE SOME OF THE REASONS STOPPING YOU FROM CONTACTING A HOSPICE? SEE IF ANY OF THEM RING TRUE WITH YOU AND THEN LET US EXPLAIN WHAT IT’S REALLY LIKE.
6 The Prince of Wales Hospice
1 MYTH: Hospices are for people with cancer TRUTH: At the Prince of Wales Hospice they support and care for people with a range of life limiting illnesses, including cancer, motor neurone disease, chronic heart or lung disease, COPD and more.
MYTH: Hospices are sad and depressing TRUTH: The Hospice encourages people to live life to the full, learn new skills and build new friendships. The Hospice team do all this in a bright, vibrant, friendly environment.
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You can get in touch with The Prince of Wales Hospice on 01977 708868 any time after you have been diagnosed with a life-limiting illness. The sooner you contact them, the more their expert team can help you live your life to the full.
3 MYTH: Hospice care is for the end of life TRUTH: It’s also for helping people live better. The Prince of Wales Hospice supports people who are living relatively well at home, through Day Therapy and outreach services. Of those who go to stay, many return home after just a short while, stronger or with their symptoms under better control.
I’ve enjoyed every minute of it. I was sceptical when I first came because I’d never been in a hospice in my life, but the staff are very entertaining, they’re very caring, very amusing! I can only give it full marks. There’s no need to be frightened.
MYTH: Hospice care is for old people TRUTH: The Prince of Wales Hospice cares for anyone over the age of 18 with a life-limiting illness. Many of their patients are active and have young families.
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Jack attended The Prince of Wales Hospice for five months
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CARE friendship & support A WEEKLY WELLBEING CHECK What if there were a place you could go one day a week, to chat to friends who really understand you and enjoy activities free of charge? A one-stop shop to see a specialist doctor, have help to feel better day-to-day and practical help planning for your future? That place is Day Therapy. Helping people live better with their life-limiting illness, Day Therapy is for people to attend just one day a week and is run by The Prince of Wales Hospice. People attend Day Therapy on the same day each week, giving you the opportunity to get to know other patients who attend on that day. It is held in a bright, airy space with a friendly and relaxing atmosphere at The Prince of Wales Hospice in Pontefract. It’s open from 10am until 3pm and you can go for all or just some of this time. There’s a team of healthcare professionals on hand so, if you have a carer, they don’t need to go with you, though they may be able to if you find this helpful.
AS WELL AS HELP WITH YOUR SYMPTOMS, MEDICATION AND CARE, YOU’LL ALSO BE ABLE TO GET: • help planning your care for the future • complementary therapies, such as Reiki, aromatherapy and massage • physiotherapy to help you to stay independent • spiritual support from the Hospice chaplain.
8 The Prince of Wales Hospice
There creative activities activities for for you you to to get get there are are lots lots of of social social and and creative involved to arts arts and and crafts crafts such such as as pottery, pottery, involved in, in, from from quizzes quizzes to painting painting and and sewing. sewing. Day Hospice is is free free of of charge. charge. Most Most patients patients Day Therapy therapy at at The the Prince prince of of Wales wales hospice arrange Therapy, but but you you can can talk talk to to the the team teamat atthe the arrange their their own own transport transport to to Day Day therapy, Hospice if this isn’t possible. Lunch and refreshments are provided, so all you hospice if this isn’t possible. Lunch and refreshments are provided, so all you need need to to take take is is your your medication medication..
The The Day Day Therapy weekly weekly sessions have have been been an enormous enormous help to to me, me, more than words words can say.
Sandra sandra
Day DayTherapy therapy patient patient
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www.pwh.org.uk www.pwh.org.uk 99
CARERS extraordinary Ordinary people in an
Many of us will one day find ourselves in the position of a carer. It’s not always a job you apply for. It’s more likely to be a job that seeks you out, because someone you love just can’t manage by themselves because of a disability, illness or old age.
role
Caring can have a major impact on your life. Looking after someone with a life-limiting illness can come with enormous emotional and physical pressures - it’s a real labour of love. The Prince of Wales Hospice caters for the physical, psychological, social and spiritual needs of carers. All the services below are available to anyone who cares for a patient known to the Hospice, and also to other carers who have been referred directly by their own GP.
Advice line The Hospice runs a 24-hour telephone advice line for carers, offering information, advice and support for their own well being or that of the person they are caring for.
Spiritual support Carers may not have a formal connection with any church or religion, but can talk to the Hospice Chaplain about their personal philosophy, faith and doubts if they think it may help.
Financial and other practical concerns The Hospice social worker can work closely with carers and families to put in place financial and practical arrangements and can advise on support available. They can also help if there are difficult family relationships.
Setting up care at home When a patient is leaving the Hospice after a stay, the team will arrange a plan of care, wherever possible. They will work with organisations that provide care in the community and at home, so patients can return home or to a care home safe in the knowledge that they will have the support they need.
Bereavement Support Complementary therapies It may be suggested to carers that complementary therapies could help them. These include Reiki, aromatherapy, reflexology and massage, which can aid relaxation and reduce anxiety.
10 The Prince of Wales Hospice
The Hospice bereavement service helps families and carers through difficult times. Specially trained staff and volunteers can provide comfort and consolation before, during and after the death of a loved one.
You may also like to contact Carers Wakefield who offer a confidential information and support service. Contact them on 01924 305544.
Future
PROOF FINANCIAL HELP The rules which decide whether you may be entitled to benefits can be quite complicated, so it’s always good to speak to an expert. The Benefit Enquiry Line is a telephone service on 0800 882200. Age UK also offer a free benefits check if you are over 60 and living in the Wakefield District - call them on 01977 552114.
LASTING POWER OF ATTORNEY Lasting Power of Attorney gives someone you trust the legal authority to make decisions for you or act on your behalf. It could just be temporary, for example to make sure bills are paid while you are in hospital. Or you may need to make more long term plans if, for example, you have been diagnosed with dementia. There are two types of LPAs, covering financial decisions and health and welfare. For a free pack with all the forms and guidance you need, visit www.gov.uk/lasting-power-ofattorney or call 0300 456 0300. It is always advisable to see legal advice.
WRITING A WILL A will makes it much easier for your friends or family to sort out everything when you die; without a will, the process can be much more time consuming and stressful. Writing a will is especially important if you have children or other family who depend on your financially, or if you want to leave something to people outside your immediate family or to a cause that matters to you.
DEMENTIA There is much that you can do in the early stages of a diagnosis of dementia to make life easier both now and in the future. The Alzheimers Society provide helpline support to people worried about or affected by dementia on 0300 222 1122.
SOCIAL CARE SERVICES If you think you need help from Social Care Services you have the right to ask for an assessment of your needs. Carers also have the right to an assessment. To find out if you are eligible for any support or to ask for an assessment, ring Social Care Direct on 0345 850 3503. For more guidance about social care, ways to look after your health and wellbeing, products to help in your care, staying safe and financial advice, visit www.connecttosupport. org/wakefield
We always put it off, but a little bit of planning can make life much easier for you and your loved ones in the future.
Except in the simplest cases, it is advisable to use a solicitor or professional will writer to draft your will. Many local solicitors take part in an annual campaign where you can have a will written free of charge and are asked to make a donation to the Hospice instead. Call 01977 708868 for more details. Age UK also offer a will making service. www.pwh.org.uk 11
• Hotel-style bedrooms • Home-made cooking • Calm, relaxing atmosphere • Beautiful gardens • Family friendly
AatSTAY the Hospice A stay at the Hospice may not be quite what you were expecting... The Prince of Wales Hospice has bedrooms for people to stay when they need 24-hour specialist care. Your doctor may suggest a stay there if you need help managing your symptoms, are struggling emotionally, or need help building your strength. All of the Hospice bedrooms are recently refurbished to an exceptional standard. They are comfortable and homely, with doors to the beautiful, and surprisingly large, gardens. None of the rooms are shared, so you can enjoy the same privacy and flexibility as at home. The atmosphere is calm and reassuring, with plenty of nursing staff who can take their time with you. It’s not sombre, like you might expect, but light and bright. Family and friends are welcome to visit and there’s even a special bedroom for close family to occasionally stay, just like at home.
I had my own room with fantastic views of the Hospice gardens. It is just lovely to be able to look out of my doors every day. One of the nursing staff even took me out in a wheelchair around the whole gardens so I could get a better look. It’s just so beautiful.
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you. .. What to bring with
current * Your medication & prescription list. ich helps you walk * Any equipment wh g gown & slippers * Nightwear, dressin clothes * A selection of day othpaste or * Toothbrush and to er denture pot & clean * Shaving kit * Tissues
* Hairbrush /comb inc. soap, * General toiletries up ke moisturisers & ma
* Photographs or magazines * DVDs, CDs, books
How can I be referred to Incare at The Prince of Wales Hospice? If you or someone you know could benefit from a stay at the Hospice, you need to be referred by your GP, hospital doctor, Macmillan nurse or district nurse. The Hospice team is responsible for your medical care during your stay on Incare, but will keep in contact with your own GP and consultant.
I’ve felt so calm and relaxed here, nothing is too much trouble and everything is put on a plate for you whenever you need it. It’s like being in a home from home.
Nurses will help ease any symptoms that cause you distress and make you as comfortable as possible. A team of consultants, doctors and other health professionals, such as a physiotherapist and occupational therapist, provide expert treatment and care tailored exactly to your needs. Many patients stay for just a short while, until they feel stronger or better able to cope and then return home or to a nursing home. The Hospice also cares for patients at the very end of their life.
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Your Hospice needs
You...
It’s never too early or too late to get involved and support The Prince of Wales Hospice. There are plenty of ways you can help, even as a patient.
It’s no exaggeration to say The Prince of Wales Hospice can only open its doors because of donations. Of almost £3m a year it costs to run the Hospice, just a third comes from the NHS. The rest is from people like you.
Donate attendance allowance
Support care every month
Support the shops
A modest monthly donation can help the Hospice care all year round. From just £10 a month you can even have your support engraved on the Celebration Tree sculpture at the Hospice.
Pop in to your nearest Hospice shop to bag yourself a bargain, or donate your good quality clothing, electrical items, furniture, unwanted gifts and household goods. Free collection and can be arranged for larger items.
Your lasting legacy
A gift of time
A gift to the Hospice in your will is a special way to leave a legacy for future generations. And it’s surprisingly simple to do! Contact the fundraising team to find out how.
Can you offer some hours each week or month to join over 300 volunteers who provide excellent care in the Hospice and customer service in Hospice shops? See the current volunteering opportunities at www.pwh.org.uk/volunteering
Some patients and their families pass on financial benefits they receive during a stay at the Hospice. These may include attendance allowance, other social security benefits or private health insurance cover.
Help The Prince Of Wales Hospice care for people free of charge and based entirely on need. Make the choice to support the Hospice today, so it can continue to be there tomorrow. For more information, call the Hospice fundraising team on 01977 708868 or visit www.pwh.org.uk
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