Palliative Care – Not What You Might Think

Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.

End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that – the NHS information page on End-of-life care includes the following exerpt:

End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.

Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.

When we have spoken about palliative care to our patient groups here are some of the comments:

Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.

 they introduce calm and certainty into a situation where neither are usually present.

I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.

Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings – in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well – for the patient and their carer and family. It made a huge difference to the lives of the people concerned.

Hospice UK

 

Aspergillosis Patient & Carer Support

Many hands symbolising people coming together and caring and coming together to help each other with their aspergillosis.

Here at the National Aspergillosis Centre, we understand the importance of providing support and pride ourselves on bringing those affected by aspergillosis together.

 

Through our social media channels, our virtual weekly support group and monthly patient meetings, we provide accessible platforms where people can ask questions, share their experiences of life with aspergillosis, and express their emotions and frustrations – with people who understand first-hand. Our members regularly share anecdotal advice and are an endless source of support and encouragement. The NAC team are always on hand to provide information, signpost to resources, and at each monthly meeting, we present on topics relevant to aspergillosis.

We have a weekly support group that meets (virtually) every Thursday at 10am and a more formal monthly meeting on the first Friday of every month, 1 – 3 pm. Everyone is welcome. The meetings are closed captioned, and you don’t have to be a NAC patient – in fact, you don’t even need to be in the UK – we welcome people from all over the world!

Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Alison was kind enough to tell us why, most weeks, she stays up way past her bedtime to join our weekly support meeting.

 

I joined the Aspergillosis Support Group when I was first diagnosed with aspergillosis. I was given zero information, so I was looking for a credible source of information. I was somewhat ill at the time, and one group member assured me that once my medication levels were right, I would get some level of life back.

 

Everyone was so encouraging while still being realistic and honest about the complexities of the condition.

Graham and others from the NAC team could answer questions from a knowledgeable, professional perspective, plus provide information on new research and developments.

 

I don’t know anyone in NZ who has Aspergillosis, so it’s nice to have a group of friends who will pick up on where I am at (health-wise), who don’t need explanations and have encouraging things to say.  They care from a position of relating and understanding that “looking well” doesn’t necessarily mean that I am.

It also helps, when I’m feeling particularly frustrated, to recognise that others are dealing with even more issues and puts things back in perspective.

 

Because the group is essentially British, the discussion often focuses on the NHS, but even that helps keep me in perspective. There is information to be gleaned. NZ has a similar Public Health System, and my current medical team seems to understand ABPA. For all its faults, I am very appreciative of what we have, especially when I have some understanding of systems in other countries.

 

I like the virtual meetings on Zoom because I am communicating with real people; it is not just an anonymous written feed.  We can joke and laugh together and share a little bit of our lives.  The slightly more directed conversations, often prompted by someone’s question, are informative and useful.  This then compliments the valuable articles posted on the support pages and website.

For more details and information on how to join our meetings, follow the links below:

Aspergillosis Patient & Carer Virtual Support Group, every Thursday 10am. 

Aspergillosis Monthly Patient & Carer Meeting, the first Friday of every month, 1 – 3pm.

 

You can find us on Social Media:

Sunflowers, self-advocacy and the cancer diagnosis that wasn’t: Marie’s aspergillosis story

In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey.

Marie talks openly about dealing with the diagnostic odyssey, the emotional impact, the need for self-advocacy and trusting your gut instinct, and how she believes it all began with a sunflower.
When asked to sum up aspergillosis, Marie uses three powerful words that will strike a chord with so many patients with aspergillosis:
  • Elusive
  • Dramatic
  • Permanent
It is an insight into the uncertain journey many aspergillosis patients have to endure before they reach a diagnosis, and you can listen to the episode below or via the link here.

You can listen to more of Katy’s podcast interviews by visiting https://www.listennotes.com/podcasts/my-rare-disease-katy-baker-thapc81FBOw/
If you want to know more about aspergillosis visit our information page here. 

An aspergillosis diagnostic journey

Image depicts a graphic of a pair of lungs, with the text 'An aspergillosis diagnostic journey' Gwynedd Mitchell

Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs, and diagnosis is difficult because symptoms are like those of other lung conditions. 

Gwynedd Mitchell is 62. She has two adult children and lives with her husband in Wales. Gwynedd is no stranger to health problems; she has extensive allergies, has suffered breathing difficulties from six weeks old, and as a child, she was diagnosed with asthma and suffered frequent attacks. But in 2012, she was left shell shocked when she was diagnosed with three aspergillosis variants, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) and three aspergillomas (a ball of mould in the lungs).

This is her experience of the aspergillosis diagnostic journey.

» Read more

Living with hyper-IgE syndrome and aspergillosis: patient video

The following content is reproduced from ERS

 

In the above video, Sandra Hicks summarises her experience with hyper-IgE syndrome (HIES), a primary immunodeficiency syndrome, and how living with this rare genetic condition and associated lung infections impacts her life. As a direct consequence of HIES and its effect on the immune cascade, Sandra concurrently manages chronic Aspergillus infection (aspergillosis), nontuberculous mycobacterial infection (Mycobacterium avium-intracellulare), bronchiectasis colonised with Pseudomonas and asthma. She discusses the effect this rare disease and infection burden have on her daily life, including the influence of other factors such as temperature, humidity and antimicrobial resistance.

Sandra conveys her hopes for clinicians treating others with similar disease profiles, including the impact of immunoglobulin treatment; early, accurate diagnosis of primary immunodeficiencies and fungal infections; and awareness of potential interactions between antifungals and other medication (https://antifungalinteractions.org). She also discusses the importance of comprehensive, timely communication within and between multidisciplinary teams. Finally, Sandra emphasises the value of support from allied healthcare professionals for people with chronic lung conditions.

Sandra has since returned to pulmonary rehabilitation classes. These provide great benefit, not just for people with COPD but also for those living with other lung conditions. Making this service widely accessible would improve management of chronic lung conditions and could even reduce associated healthcare costs.

Sandra Hicks is a co-founder of the Aspergillosis Trust, a patient-led group that aims to raise awareness of aspergillosis. Click here to visit the group’s website and find out more about their work. 
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