As your relative or loved one approaches the end of their life, there are many conversations that need to be had in a timely manner. More specifically, asking the question of what matters most to them if their health deteriorates, can help you plan for their comfort. Such as: would they rather be in a care home or at home? Do they want feeding tubes? Who do they want looking after them? Often described as ‘An extra blanket of support’, palliative care is an avenue for those wishes to be met in a reassuring and dignifying way. In a recent webinar with Reach by Nightingale Hammerson, our Palliative Care Manager Polly Landsberg walked us through the ins and outs of palliative care, addressing some questions and concerns you and many people may have, such as…
Who is Involved in Palliative Care?
A key contributor to effective end of life care is what Polly calls “joined up working”: a collaborative approach involving a communicative network between all the professionals. Your loved one’s GP, palliative care nurses, occupational therapist and any other care professionals will liaise and communicate based on information shared about the person receiving palliative care. If you are a client with us, your SweetTree care manager will also be part of this network. Their job is to give you important information which helps you ask the right questions and understand the resources that may be available to you.
“Joined up working” serves to ensure that no information is overlooked or misunderstood about a client. As a result, it reduces your stress and enhances the understanding that professionals have about you which allows them to prioritise your needs and uphold dignity – one of our core values. Care support with SweetTree can guide you, your loved ones and other care professionals with decisions about treatments such as when to discontinue certain medications or therapies.
How Can I Pay for Palliative Care?
A common question amongst families looking at palliative care, this can typically be done though funding, of which there are two main methods of acquiring. One being through Continued Healthcare Funding. This is a funding package directly from the NHS through the local health authorities, also known as Integrated Care Boards (ICB) – you can find your local ICB through the NHS site. Each local ICB has its own commissioner who decides how much funded care a client receives, based on the palliative care nurse’s advice. This won’t be an individual figure, but it will be converted into hours of care. From there, you can either choose a care agency to receive care from, or the commissioner will appoint you an agency that they are in contract with. It’s important to note that funding isn’t fixed and can change based on the needs of a client, whilst receiving care.
Another option of funding is Attendance Allowance, a universal benefit that everyone receiving care in the UK is entitled to. You can receive Attendance Allowance through the Department for Work and Pensions (DWP). Those receiving end of life care, continuous day care or continuous night care are entitled to a higher band of funding, which is approximately £108 weekly.
How Can I Support my Loved Ones?
Considering the limitations someone receiving end of life care may have, there are many practical tips you can implement to help them feel comfortable. For example, you can:
- Help them maintain good hygiene and skin care.
- Change their pads regularly, if they cannot access a toilet.
- Help them with soft foods like yoghurts and smoothies if they are unable to swallow solid food.
- As their appetite disappears, make sure that their mouth and lips are kept moist. SweetTree managers also offer catered advice to family members as to how to maintain good mouth care.
- Create a comfortable, warm and homely environment. Decorate their bedroom/lounge with fresh flowers and let sunshine in through the windows. Music can also help, as hearing is often the last thing to go.
- Consider their sensory impairments. Make sure that their hearing aids are charged or glasses are on their face so that they can be aware of who is talking to them.
Where Can I Receive Support as a Caregiver?
We understand that end of life care is an emotionally challenging time for not only the individual receiving it, but also their family, friends and carers. At SweetTree, we focus on the experience of our clients as much as that of their primary caregivers. We offer support to them on a daily to weekly basis, with regular checkups to see how they are, understand how things are going, how we can help them going forward and how they can get further support. We even have an out of hours phone number, for support when conditions change during midnight hours. Similarly, many charities such as Marie Curie, Chai Cancer Care, Age UK, Jewish Care and more offer support to family members during this time.
Palliative care isn’t not an easy process, and we understand the importance of wanting to do the right thing for your loved one. If you are interested in receiving palliative care or have more questions that weren’t answered in this article, you can contact us or visit out palliative care service page.