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FAQs Open Up Hospice Care

FAQs about Open Up Hospice Care
1. How does hospice care benefit patients and families? 

Hospice care supports individuals to deal with issues such as pain and emotional distress that can come with adjusting to, and living with a life-limiting illness. Hospice care also supports carers, family members and friends through services such as counselling, respite care and bereavement support services.

This expert, compassionate and free care that hospices provide, plays a vital role in easing suffering and relieving pressure on families and the NHS.

2. What is Hospice UK? 

Hospice UK is the national charity for hospice and palliative care. Hospice UK advocates for and supports the work of more than 200 member organisations, which provide hospice care to around 200,000 people across the UK each year.

Wakefield Hospice is a member of Hospice UK and is playing an active role in the Open Up Hospice Care campaign.

3. What can you tell me about the Open Up campaign? 

Open Up Hospice Care is fundraising and awareness-raising campaign which aims to broaden access to hospice care, so that more people who need it are able to get this type of care.

The campaign has been initiated by Hospice UK and runs nationally from 4 to 29 March 2019. Wakefield Hospice is a member of Hospice UK and is playing an active role in the Open Up Hospice Care campaign locally.

4. Where does the one in four statistic come from? 

One in four families in the UK who need hospice care are not able to get the support they need. This is the national figure for the UK but the proportion of families who are not able to get hospice care can vary from region to region.

The statistic is analysis by Hospice UK, and is based on methodology in the Independent Palliative Care Funding Review (2011) which was limited to England and which has been applied to 2015 UK-wide mortality statistics. If you’d like further information on this statistic, please contact Head of Fundraising, Charlene Vallory, at c.vallory@hospiceuk.org

Further information: 

• The hospice care sector supports approximately 200,000 people with life-limiting conditions in the UK each year.

• Hospices also have an important role in supporting people’s families, especially in providing bereavement support. Almost 50,000 people in the UK receive bereavement support from them each year.

• Hospices support people with a wide range of conditions including cancer, motor neurone disease, cardio-vascular diseases, dementia, multiple sclerosis and Parkinson’s disease. Hospices are increasingly supporting people with multiple life-limiting conditions.
 
5. What prevents people from getting hospice care?

Just as the needs of people and their families at the end of life vary, so too do the reasons that people miss out on the right support.

Studies have shown that people from economically deprived areas, BAME (black and minority ethnic) and LGBT (lesbian, gay, bisexual and transgender) people are not seen in palliative and expert end of life care services as often as expected. Furthermore, people with life-limiting conditions other than cancer access hospice care in fewer numbers and later in their illness than others. Lastly, people who live alone at end of life also tend to have barriers to accessing expert end of life care.

6. How can we ensure that more individuals and families get hospice care? 

The Open Up Hospice Care campaign seeks to change this by raising awareness among the public about the fact that hospice care is available to all people, regardless of their sexual orientation, ethnicity, disability or illness.

The responsibility to meet the needs of all people at end of life does not fall to one set of shoulders. Rather, a whole host of actions by a range of different players are needed.

There are a number of other ways in which Hospice UK and hospices are working to widen access to hospice care. For example:

• Hospice UK is investing in new technology to foster collaboration between hospices and other practitioners, such as care homes and hospitals. This will help to ensure that hospice care is available in other settings.

• Hospices and Hospice UK are working together to identify and support those who may be missing out on hospice care in their catchment areas. Filling those gaps in our knowledge is critical to reducing the inequalities in care that we know exist.

• Across the UK, the hospice movement is investing in community engagement programmes to reach out to specific groups which are missing out on hospice care. Through events, training and resources, best practice is being shared.

7. What can I do to support the Open Up Hospice Care campaign? 

Hospice staff, volunteers and supporters – as well as the public – can play a vital role in extending the reach of hospice care. We are encouraging people to take three actions: to donate to the Open Up Hospice Care campaign, to organise a Taste of Home event for your family and friends and to share your stories.

8. Where will my Open Up donation go? 

Money raised through our hospice channels will go towards supporting Wakefield Hospice’s work to open up hospice care in our community. Donations will enable us to continue to provide expert care to our patients, provide support to their families and friends, providing therapies, information and care for patients, carers and bereaved families.

9. Will the money raised by the Open Up campaign go directly to my local hospice? 

Members of the public who choose to make a donation to a specific local hospice, through its websites and other channels, will be donating directly to those local hospices on local projects and services.

Donations made via Hospice UK’s website and social media channels will go to Hospice UK which will in turn support its work. Hospice UK works with more than 200 member organisations across the country who provide care for people with a terminal illness and their families when they need it most.

10. What can members of the public do in order to get hospice care for their loved ones? 

As a first step they should speak to their GP or consultant. Getting a referral via a healthcare professional can mean that all relevant information is provided to hospices at the appropriate time and can speed up the process.

You can also use Hospice UK’s find a hospice service (www.hospiceuk.org/ findahospice) to locate and get in touch with your local hospice.