A new hurdle put in the way of hospice
Having read the article (Maidenhead Advertiser, April 12) about Alexander
Devine Children’s Hospice still waiting for vital government funding, I found it appalling that another layer of bureaucracy has been added to a process that, having so far been seamless and straightforward, has now become a fight with local authorities.
Over the past few years I’ve been a volunteer at Alexander Devine, privileged to help the amazing care and fundraising teams to support hundreds of children with life limiting and life threatening conditions and their families.
The hospice covers Berkshire and the surrounding areas and the work is carried out both at the hospice itself and with home visits.
I have witnessed palliative care administered by our wonderful care team and it’s about giving families, during the most dreadful time of their lives, a safe and loving place where to be with their loved ones, knowing that they are looked after and still able to make positive, lasting memories even during the most harrowing experience.
One of the perceptions is that Alexander Devine is solely about end of life but it couldn’t be further from the truth.
Although sadly that’s one of the roles, the hospice provides hundreds of hours of respite care so that families can have the break they need from being the main carers.
Having to look after a child with many complex needs is a labour of love but an exhausting task nevertheless, one of which
our families fulfil 24/7 without ever complaining. Also, on top of the daily care, there’s the neverending battle to access the appropriate services in order to get the best for their children.
Alexander Devine provides an arm around their shoulder and practical support whenever is needed, during the illness and beyond.
Through medical care, counselling, hydrotherapy, music therapy, arts and crafts, supporting siblings, themed events, Alexander Devine makes the abnormal become normal, parents can be just mums and dads, sibling brothers and sisters, without the constant worry of being carers.
What is so frustratingly shortsighted from the government and local authorities is, if Alexander Devine and other similar great charities weren’t able to provide these
types of services, due to lack of funding, that load would inevitably fall on the NHS which is already at breaking point.
From my part, knowing that I give my time so that our families can have quality time of their own, is what makes it all worthwhile. When I ask any of our mums and dads ‘How are you?’ and they reply without hesitation ‘Rested!’– well that’s enough for me.