04th July 2016

Independence Day

Independence Day will mean different things to different people.  In America it is the day that celebrates the adoption of the Declaration of Independence and the formation of the United Sates of America.  For some it will just be the iconic film starring Will Smith, Bill Pullman and Jeff Goldblum saving earth from nasty alien invaders. Perhaps for those in the UK, June 23rd may now become the day to celebrate or commiserate the start of independence from the EU.  However, more recently for me, the idea of independence has been brought into sharp focus, but in a very different context, through the lives of two people at either end of the age spectrum: my 19 year old god-daughter and my seven-decades-older father. Independence is a fundamental desire for them both and yet whereas many of us can take it for granted, for them it is a daily struggle to try and maintain.

Butterfly Ball.jpg

Let me start with my god-daughter Antonia. At nearly 19 years old she attended a glitzy ball last week at the Grosvenor Hotel, London. Nothing particularly unusual there you may say. But the ball was not just any ball, it was the prestigious Butterfly Ball held for the charity Caudwell Children. And Antonia was not there just to party, she was there as one of the organisation’s local ambassadors.  You see Antonia has spent most of the last 4 years in hospital, and I mean in hospital, not in and out of hospital.  Antonia has Ehlers-Danlos syndrome (EDS) with gastrointestinal failure and postural orthostatic tachycardia syndrome (POTS) - rare and debilitating diseases. Her ability to attend was due in part to the great work of the charity itself, which financially supported Antonia’s purchase of a state-of-the-art wheelchair, allowing her to start living back home and get a little of her independence back.  The reality is that there are limits to NHS funds so people like Antonia need the support of charities like Caudwell Children to help them achieve some independence.  It is estimated that some 70,000 children and young people in the UK would benefit from the right mobility equipment. The charity supports young people and their family carers in their battle to achieve some independence in their lives by helping provide the right mobility equipment, but also assist with family support, treatment services, rehabilitation programmes and other initiatives tailored to individuals’ needs.  Antonia recognises first-hand the life-changing importance of the work undertaken by organisations like this and through the charity is now doing her best to help support other young people in similar situations, including helping in the training of the charity’s volunteers.

Now move to the other end of the age spectrum and there is my dad who, having had a fall and a short stay in hospital, finds himself in need of support to be able to remain living independently at home.  Living on his own, social isolation is also a significant barrier to independent living.  Social care can help, but two weeks have gone by and, due to lack of local resources available, he’s still not getting the level of support that is acknowledged he needs. Once again the charity sector is there helping the estimated 2 million people over 75 who, like my dad, are living alone and longing to maintain their independence.  Organisations like Age UK fill in where they can, helping make lives easier and safer, whilst improving wellbeing. Handyperson services, shopping delivery, lunch clubs to provide social interaction with those in a similar position, and even computer training are just some of the amazing services they provide the elderly in need. But once again, their work to help maintain independence relies on the support from those perhaps more fortunate.

There are many charities like these that are trying to do good work to help keep young people with health issues, and the elderly, independent. But they need support, both financial and through volunteers. So in celebrating our independence, perhaps we can give a thought, and perhaps more than just a thought, for those to whom just a small degree of independence can mean so much, and those who work tirelessly to help them.