Recent coronavirus coverage in the news has included the national shortage of personal protective equipment (PPE), whilst Public Health England has recently updated its guidance on the use of PPE for all health and care workers, including personal assistants, those in care settings and those receiving care in their own home. However, there has been little mention of the shortage of equipment essentials and how this is affecting disabled young people and adults at home.

My Family, Our Needs has spoken to Christine Singleton, a Mum of three whose eldest Will is profoundly disabled. Christine, and other parents of disabled children she knows, has been asked for feed pumps, oxygen back-up bottles and oxygen concentrators to be returned so that they can be distributed to other places, including hospitals. Here, she tells us her story.

About me

I suppose my story really began when our family went on holiday for a few days. After packing the normal things that every family needs; clothes, food, and the buckets & spades  and then everything that our young man needed, including medication, continence products, syringes, breathing equipment, slings, portable hoist, indoor supported seat, tracheostomy, splints, the normal ton of extra clothes for the inevitable mishaps AND the kitchen sink, we set off for our few days away.

We were having a brilliant time, but suddenly I realised that I had forgotten to pack a box of milk feed; feed that our son was reliant upon and imminently needed. What do we do now? I rang the out-of-hours doctor who assured me that she would be able to get me the feed we needed. However, three hours later she informed me that she had been unsuccessful and that our ‘only option was to either drive home or put our son into a regional children’s hospital.’ So, to avoid unnecessary risk of infection, we felt our only option was for one of us to leave our family and drive home.

This experience gave my husband and I food for thought; if only there was a warehouse that stored everything you could possibly need, open and accessible any time of the day or night. But where would this be located, as no one location would be suitable for all?

Then, we had a light bulb moment… many people who have additional needs already have a ‘warehouse’ at home whether it’s in their garage, shed or a spare room. Someone somewhere could have almost certainly helped us, they could have lent us some feed to tide us over, and we could have someday returned the favour.

Starting my charity

With that in mind, we created a messaging support system called Skiggle; it immediately responds to urgent requests for missing or forgotten care-based essentials to help individuals, carers and families continue their day.

Whatever you need, whether it’s a charger, tracheostomy tube, feeding equipment or other care items, the Skiggle community is ready to help rescue a family’s holiday, support their day trip, or simply get them through breakfast and maintain their daily routine.

It’s simple to use. People can send an SOS message through the moderated website with a request and they will endeavour to match you with the nearest Skiggle member who can assist.

Skiggle also provides an online Marketplace, where registered members can exchange surplus care-based essentials.

If you have sealed feed items, specialist disability equipment or care consumables that are no longer required, the Skiggle marketplace is there for you to re-home your unwanted items, reduce your waste, and potentially relieve costs. In the current climate, it may even save lives.

Pressures of COVID-19

Sadly, due to the ongoing COVID-19 pandemic, the pressure on the Skiggle community is greater than ever.  Many of the most vulnerable, their families and carers are being placed in difficult situations with their care-based essentials being limited, reduced and recalled.  The basics required for everyday supplies are now also needing to be shared with the emergency hospitals being put in place around the country.

At times it feels like the Government is placing a hierarchy across the nation. Without a doubt, the NHS, their frontline staff, supporting offices and care workers are all doing an amazing and extremely noble job. They are also being asked to make impossible decisions in prioritising who receives vital equipment and care to save lives.

To support the NHS, to keep those vulnerable out of the hospital, and help combat COVID-19, I believe we must challenge the current policies in place to stop care-based essentials being removed from those that need it most. We must protect disabled young people and adults. We must reduce the number of vulnerable people ending up in hospital, due to their home-based care essentials being taken away.

Support our survey and petition

We are calling for an urgent review of Government policies regarding the supply of care-based essential supplies to home-based, vulnerable individuals. Please sign our petition to ask that the most vulnerable continue to receive the care products they desperately need to keep them safe and at home.
Sign the petition here.

If you are an individual whose care-based essentials are being compromised, or if you know of someone in a similar situation, we would also like to hear from you. Please complete this anonymous survey, it should take no longer than 10 minutes.
Complete the survey here.