I wanted more than anything to take my disabled daughter abroad

No matter how much you prepare, going on holiday, especially abroad, always gives you the nagging feeling you’ve forgotten something. In the last moment of stress before you jet off, you pack, repack and check again for items like sun cream and underwear.

But for families with a disabled child with medical needs, the prospect of forgetting something can be a lot more worrying.

Preparing to take Elisa out, even just for a day, was a logistical chore. Her level of cerebral palsy was classed as severe, leaving her completely immobile. Her day bag would contain: medicines (15 types, some classed as controlled), SATs monitor (to check heart rate and blood O2 levels), oxygen cylinder, spare clothes, continence pads, feed pump, suction machine, plus spares. This experience is common for medically complex children.

With medications, there are also limits on where you can travel. Some countries have very strict punishments for medicines entering the country without proper paperwork, and some drugs are completely banned, especially opiate-based painkillers or medications like diazepam and midazolam, which are common forms of rescue medication for complex medical needs children.

Another consideration is sourcing further supplies while abroad and notifying the proper medical facilities in case of emergencies. Oxygen cylinders would need to be ordered in advance and stored at the destination – this isn’t always feasible, especially for a child with breathing issues who might require constant oxygen use.

Then there is travel insurance, finding a hotel with proper accessible facilities such as hoisting, or an airline that can accommodate a wheelchair. It’s not impossible, but it’s challenging.

With all these considerations, a lot of families with physically disabled and medically complex children forgo travelling abroad. Unless for very specific reasons with extended support such as trips organised through organisations like Make-A-Wish or The Lexi May Trust. These trips are often undertaken with the knowledge that for one reason or another, it might be their last opportunity.

Travelling within the UK is a lot easier, and finding a paediatric unit near where you’re planning to travel can simplify things a lot. But with all the preparation and the care duties required of parents, it often doesn’t feel like a holiday, just more of the same in a different location.

Recent research by the Disabled Children’s Partnership highlights how families are pushed into further isolation during the summer holidays.

Local authorities provide some holiday clubs, which are often advertised as special educational needs and disabilities (SEND) inclusive, but the higher the medical and mobility needs, the more likely that they are unsuitable.

For us, Elisa would need a nurse to accompany her. She could require lifesaving intervention. Even away from home the worry and anxiety for parents is still there, so respite may be a break from the physical duties but not the emotional. Those holiday clubs that do offer SEND inclusion often do the bare minimum to fulfil the obligation of inclusivity, catering to only to a narrow definition of disability, and even then, in some instances they ask for parents to pay for additional carers for their child if needed.

And by carers, I mean skilled individuals whose training includes medical knowledge and intervention and following child-specific symptom management plans. These carers are few and far between, most of them already working for other organisations, who do private work with families to top up their wages.

So while families look forward to the holidays, families with disabled children approach them with some concern. With limited opportunities, parents must prioritise and make more sacrifices than the average family. Summer holidays are often difficult to juggle. Holiday clubs could help families by providing the support and respite parents require. Sadly, the more profound the disability, the harder it is.

We never found a suitable holiday club for Elisa. The closest was a day session provided by Julia’s House Hospice, but these were limited, and the hospice was often overstretched as it took on the role of providing services for profoundly disabled children where our local authority didn’t. If we could have found more services suitable and able to care for her, it could have made our summers a little easier, a little more relaxed, and a little more respite would have done wonders for our mental wellbeing.

Dan McEvoy was a parent carer to his disabled child Elisa for nearly 10 years. He is a spokesperson for Together For Short Lives and has been campaigning for disability rights ever since