“No bingo, no basket weaving and no tartan rugs,” is what one MS focus group told us they didn’t want from a break when the MS Society was planning its Short Breaks service.
The thinking behind the service which was set up in 2011 was that for too long the only option specifically available to support people with MS and their families was a respite break in a care or nursing home. However, while a diagnosis of multiple sclerosis can encompass many potential changes, people’s desire to take a break of their choice remains the same. And that also applies to their partner and family.
The need to escape the usual routine is even more important for your wellbeing if you are living with MS or caring for someone with the condition. A chance to get away from it all can help recharge batteries and strengthen bonds between couples and families. However, the day-to-day practicalities of living with MS can make booking a break daunting. This is where the MS Society Short breaks service team can help.
Talking It Through
Chris Evans, who leads the team, explains: “If someone rings looking for a break, we talk through what it’s like to travel, explain the possibility of hiring any equipment they may need when they are away and what they can do if they need a carer while they are away. People told us that they wanted to be able to take a break where they choose with care and equipment available.”
The MS Society works in partnership with six different organisations to provide something a bit different for those looking for respite. This helps cover a whole range of options including travelling with a full time carer or buying in any care needed on an hourly basis, discussing accessible travel and accommodation options as well as how welcoming a destination is for someone with reduced mobility. By booking a package holiday through one partner Accessible Holidays, travellers can get a 5% discount on flights and accommodation.
Unfortunately many people with MS are living on a low income and so may not be able to afford a break. If you qualify for social care assistance from your local authority then you may be able to get help with the cost of a break and if you don’t qualify but are on a low income you may qualify for a grant from the MS Society short breaks and activity fund.
Chris explains: “As it is a limited fund, we assess the requests on the basis of the benefit a break will bring to an individual and their family.”
Making Dreams Come True
Ten years after receiving a diagnosis of secondary progressive MS, Stuart Philps approached the South Devon branch of the MS Society for help and advice in planning a holiday. Stuart and his then 10 year old daughter Lauren had to leave their house for a fortnight to allow for vital adaptation work and Stuart was adamant that he did not want to go into respite care as proposed by Social services. He also needed to make suitable arrangements for Lauren.
Stuart and support volunteer Kate, looked into a number of possible options including accessible accommodation in a UK holiday park and specialised holidays for people with disabilities but both were going to be more expensive than his dream of taking his daughter and his mother to Disneyland, Florida.
A grant from the MS Society Short Breaks and Activities fund was topped up with grants from two local charities and the local Lions helped out with travel costs to the airport.
Stuart said: “America has a great reputation for its facilities for disabled people but I must admit as the trip approached I became rather apprehensive as I was going to be so far out of my comfort zone.” However, as soon as the family arrived at Gatwick and were welcomed by helpful and supportive staff, he began to relax and the family had a fantastic trip.
“Seeing the pleasure on Lauren’s face is something that will stay with me forever,” said Stuart. “We had an amazing time, starting with our initial flight, the park attractions, boat rides to the wheelchair accessible buses; there was a real ‘can-do’ attitude from everyone regarding my disability.”
He added: “We have been genuinely overwhelmed by the amount of money that has been raised for us, I know that without this financial help we couldn’t have even considered this holiday. The MS Society has blown me away; they have made my dreams a reality.”
To See The Lights
Ever since sharing a house with two Norwegians at university, Kerry Soloman had harboured an ambition to see the Northern Lights. Two decades later and 10 years after she was first diagnosed with MS, a bad fall led to her being able to do “nothing at all”, and she was referred to the Mardon neuro-rehabilitation centre. After an extended stay of six months and lots of hard work on all sides, she left in a much better state than she arrived; able to walk with a wheeler.
Kerry had saved for a long time for a trip to Norway to mark her fortieth birthday and boosted by a new ‘can do’ attitude on leaving the centre decided to book a cruise.
On the last but one night, she finally saw the Northern Lights.
“You are not guaranteed to see them by any means but they came out in full effect,” said Kerry.
Kerry travelled with a university friend and a grant from the MS Society Short breaks fund paid for a carer to accompany her. Although much more mobile that after her fall, Kerry has reduced mobility, for example, if she falls then she is unable to get up again by herself, so a carer was essential for the trip.
“I came out of the holiday with a lot more confidence in what I can do. Before I would just stay in the background, out of the way of life.” She made a lot of friends on the trip and was touched by how chatty people were.
With her new found confidence, Kerry is now tackling the garden at her new home and is looking forward to becoming a beekeeper at a local private garden – something she has wanted to do since primary school. She is also dreaming of future trips and says: “My partner and I used to fly birds of prey and had a Harris hawk that we would fly every day. I read the other day about a holiday in Nepal where you can go on a paraglider, following the birds up a thermal and feed them from the glove. I would love to do that although I will have to save hard and hope that my MS allows me to do it.”