Hello, my name is Melissa Mungovan and I have been the Lead Nurse for Demelza’s community team in East Sussex for 6 years. Demelza is hospice care for children in the South East, with hospices in Kent and Eltham and all 3 sites offering community services. You will have gleaned from my area of work that this blog is potentially emotive, but I am hoping that the content will surprise you. I am passionate about changing the views of hospices, palliative care and death, and challenging myths and assumptions.
Palliative is often a misunderstood term. For most people, when this word is used, they associate it with dying, but what it actually means is that there is no curative treatment available. A person can be identified as being at a palliative stage but may go on to live for many years.
Cancer is the disease most commonly associated with palliative care, and sadly, for most, they do not have as much time as many others. During covid, we saw a rise in oncology referrals to our service for symptom management and end of life care. This was due to the wider pandemic implications such as reducing travel and contacts, not because of the virus itself. Since then, the referrals have continued, and our community team have been able to provide exceptional end of life care in the child or young person’s home. Some families will choose to go into hospital, but more now are choosing to be at home, with their own bed and comforts, family, and familiarities.
Demelza Nurses are able to provide everything the child/young person needs, whilst supporting the whole family’s holistic needs. We are able to facilitate many wishes, memory-making activities and support quality family time. Demelza have therapists, as well as counsellors and family liaison practitioners, who complement the work of the clinical team as required.
I am aware that alongside the word ‘palliative’, the word ‘hospice’ also fills people with dread, with thoughts that it is all about death and dying. Our work is not all about death, but dying is a part of it. The earlier we receive referrals, the more we can do, and to enable this to happen, we need our external colleagues to understand what we can offer, and to be able to confidently explain this to families, without being scared of mentioning the ‘H’ word. Many referrals to Demelza are received just in time for end of life care, which means precious opportunities have been missed and can impact upon the long term grief process of family and friends.
For the most part, our work is about supporting families to get some rest, have fun and to make amazing memories. Our hospices are bright, welcoming, and predominantly happy places, and the earlier children and young people are referred to us, the more fun things we can plan and the more support we can provide. Many children and young people who are referred to us, outlive our services as they become adults, so when a referral is made, it is not the signal that there is little time left or limited hope, it is to enable families to access extra support and care outside of statutory services.
Our staff are extremely experienced and specialised in their field, and caring for children with extraordinarily complex health conditions is what they do, immensely well, every single day.
As medical science has improved, children and young people with complex health conditions are now living longer than ever anticipated, and their care is more complex than ever, with our staff rising to the challenge every time. Palliative care has to have a collaborative approach, to be effective, and we collaborate very closely with external professionals to ensure we are delivering the best care possible.
Death is often referred to as the only certainty in life, and yet most people are still reluctant to talk about it, to discuss feelings, wishes and finer details. A palliative diagnosis is often a pre-cursor to these discussions, but what are we wating for? We spend our lives communicating and planning, but one of our most important life events we shy away from and talk in hushed tones. Many of us approach death with no plans in place and no one knowing what we would have liked, but we rarely approach any other event in life in the same way. How many of you have a will or have discussed death and funeral wishes with your relatives or friends? Go on, be brave and start the conversation. It may be challenging initially but imagine what might happen if you don’t.
Yes, we are a hospice service, and yes, we do support end of life care, but what we strive for is for the children, young people and their families to have the best life first……and isn’t that what we all want?
Palliative is often a misunderstood term. For most people, when this word is used, they associate it with dying, but what it actually means is that there is no curative treatment available. A person can be identified as being at a palliative stage but may go on to live for many years.
Cancer is the disease most commonly associated with palliative care, and sadly, for most, they do not have as much time as many others. During covid, we saw a rise in oncology referrals to our service for symptom management and end of life care. This was due to the wider pandemic implications such as reducing travel and contacts, not because of the virus itself. Since then, the referrals have continued, and our community team have been able to provide exceptional end of life care in the child or young person’s home. Some families will choose to go into hospital, but more now are choosing to be at home, with their own bed and comforts, family, and familiarities.
Demelza Nurses are able to provide everything the child/young person needs, whilst supporting the whole family’s holistic needs. We are able to facilitate many wishes, memory-making activities and support quality family time. Demelza have therapists, as well as counsellors and family liaison practitioners, who complement the work of the clinical team as required.
I am aware that alongside the word ‘palliative’, the word ‘hospice’ also fills people with dread, with thoughts that it is all about death and dying. Our work is not all about death, but dying is a part of it. The earlier we receive referrals, the more we can do, and to enable this to happen, we need our external colleagues to understand what we can offer, and to be able to confidently explain this to families, without being scared of mentioning the ‘H’ word. Many referrals to Demelza are received just in time for end of life care, which means precious opportunities have been missed and can impact upon the long term grief process of family and friends.
For the most part, our work is about supporting families to get some rest, have fun and to make amazing memories. Our hospices are bright, welcoming, and predominantly happy places, and the earlier children and young people are referred to us, the more fun things we can plan and the more support we can provide. Many children and young people who are referred to us, outlive our services as they become adults, so when a referral is made, it is not the signal that there is little time left or limited hope, it is to enable families to access extra support and care outside of statutory services.
Our staff are extremely experienced and specialised in their field, and caring for children with extraordinarily complex health conditions is what they do, immensely well, every single day.
As medical science has improved, children and young people with complex health conditions are now living longer than ever anticipated, and their care is more complex than ever, with our staff rising to the challenge every time. Palliative care has to have a collaborative approach, to be effective, and we collaborate very closely with external professionals to ensure we are delivering the best care possible.
Death is often referred to as the only certainty in life, and yet most people are still reluctant to talk about it, to discuss feelings, wishes and finer details. A palliative diagnosis is often a pre-cursor to these discussions, but what are we wating for? We spend our lives communicating and planning, but one of our most important life events we shy away from and talk in hushed tones. Many of us approach death with no plans in place and no one knowing what we would have liked, but we rarely approach any other event in life in the same way. How many of you have a will or have discussed death and funeral wishes with your relatives or friends? Go on, be brave and start the conversation. It may be challenging initially but imagine what might happen if you don’t.
Yes, we are a hospice service, and yes, we do support end of life care, but what we strive for is for the children, young people and their families to have the best life first……and isn’t that what we all want?
