A hospice in Kirklees is encouraging more South Asian and other minority ethnic communities to rid the stigma attached to accessing help and services for families and children with life-shortening conditions.
Forget Me Not is a hospice in Huddersfield that supports children and families with life-shortening conditions from pregnancy to the age of nineteen. The hospice provides a variety of support, from counselling, dedicated nurses that provide around the clock treatment, to end-of-life support, and grief care.
Community engagement officer, Salma Pandor, who also works as a bank nurse, is keen to promote the services of the hospice to families in South Asian communities across West Yorkshire. She said: “Part of my job is to work and connect with people from South Asian and other ethnic minority communities to promote knowledge on what services Forget Me Not provides and how to access them.
“We need to break down barriers and end the stigma associated with hospices in the community. When people hear the word ‘hospice’ they think ‘end-of-life care’ which we do provide, but we also offer so much more than that.
“The support we provide is positive. We can help families from diagnosis which might even be at the pregnancy stage right up until the young person turns nineteen.
“The support provided varies from person-to-person, so our care is tailored to every child’s needs.
“We also provide support to the whole family, parents, siblings, even grandparents. There are support groups or individual counselling available, at any stage of their child’s hospice stay.”
Ms Pandor went on to say that despite 60% of the children who use the hospice are of a South Asian or other minority ethnic heritage, the work that Forget Me Not does is not well known or understood in these communities. She says that it is because “people are scared or are scared of the stigma that comes with using the services”.
One reason people fear the stigma that surrounds hospices is that health conditions are often seen as a source of shame or are taboo to talk about. Often, religious, spiritual, and cultural beliefs can form the basis of negative thinking towards people with illness, that it stems from not being religious enough or that illnesses can be cured with good enough faith, prayer, or good behaviour.
Openly talking about illnesses, especially life-shortening conditions in children, can reduce the fear and stigma, and can promote access to services such as Forget Me Not Children’s Hospice which can in turn improve the quality of life of both children and families who are impacted by these conditions.
The hospice can help provide a better quality of life through its dedicated team of highly specialised nurses and therapists, who deliver an ‘outstanding’ level of support.
The charity also provides ‘hospice at home services’, which includes clinical care, therapy support, everyday practical help, and end-of-life and beyond care for families. Home support is available across West Yorkshire, including Kirklees, Bradford, Wakefield, Leeds, and Calderdale.
If families need or want ‘home from home’ care, then the Russel House in Huddersfield provides that. It is a bright and happy place that provides accommodation for children and their families to stay whilst receiving care.
The children’s rooms are not like hospital rooms, instead, they are there for when children need to stay overnight or when parents need respite, children can even bring their own bedding, toys, and posters if they want.
They also have hotel-like rooms for parents to stay when their children are in the hospice and have a specialist facility called the ‘Snowflake suite’ for families when saying their last goodbyes.
The hospice is also kitted out with the very best mod cons including a hydrotherapy pool with sensory lighting and gentle water movement to provide comfort and fun to those needing to relax their muscles.
They also have a music room and sensory room that are there for children to learn, to have fun, make noise or even throw a party. The hospice has also recently added a cinema room that both staff and patients enjoy.
Ms Pandor joined the hospice as England emerged out of the most recent lockdown in June 2021, but she says that during the last eighteen months the hospice has adapted to providing more at-home care in the community but struggled to raise funds for the charity.
The hospice, which is celebrating its tenth anniversary this year, currently only receives four percent of its funding from the Government, relying on money raised through its 15 charity shops across England, donations, fundraisers, and benefactors to fund the rest of its care.
It costs approximately £4 million a year to run the hospice. Out of every pound donated, 80p goes directly to providing care, with the remaining money going to maintenance and staff costs.
One of the ways the hospice is raising much-needed funds is through its 10th-anniversary ball which is being held in March next year. The black-tie event will be held at the recently refurbished Queens Hotel’s ballroom in Leeds. Tables for the event start at £750 for ten people with a three-course meal and tea and coffee included.
The hospice also relies heavily on volunteers, without whom, they would be unable to provide the services that they do. Ms Pandor says: “There are plenty of ways you can get involved with the hospice, either in the hospice itself or at our events or in our charity shops.
“Volunteers are vital to the hospice, there isn’t a single part of the charity that could run without them.
“You might be able to help us with gardening, or doing some ironing for exhausted parents, or reading to siblings.
“You could also raise money for us through fundraisers or collecting change at your workplace. There are so many ways in which people can volunteer that not only helps us and our patients but also feel rewarded at the same time.”
For more information, you can email the events team at events@forgetmenotchild.co.uk or book a table at the ball on Eventbrite, here. For volunteering opportunities, you can visit here.
Glossary: Sharam = Shame
