Posted on Friday 29 November 2019
Philippa’s story – “The impact of travel costs can put you to breaking point”
Philippa was diagnosed with Burkitts Leukaemia in September 2017 when she was just six years old. Mum Hayley and dad Gary faced a 160-mile round-trip the family’s home in Brighton to get their daughter to hospital in Southampton, where they were based for ten months.
Whilst on holiday in Spain, someone commented that Philippa looked pale, and within a week of being back, Philippa was really tired, off her food, and her skin had a slightly yellow tinge. Whilst bathing their daughter, Hayley and Gary noticed she had lots of bruises on her legs. Almost as soon as they walked into the doctor’s surgery, the doctor instantly referred them to the hospital for blood tests where it was confirmed on the same day that she had Burkitts Leukaemia.
The family were sent to Southampton where they were based for three months – around a 160 mile round-trip from the family’s home in Brighton.
Hayley said: “The first one to two months were really quite bad, Pip reacted badly and ended up in intensive care. I thought we were going to lose her, her body just wasn’t coping with the treatment. Gary’s mum moved in at home to look after our three other children and our two businesses.”
Throughout the ordeal, mum Hayley was able to stay with Philippa at CLIC Haven, CLIC Sargent’s Home from Home in Southampton. “Without CLIC Sargent we could not have got through this. Our CLIC Sargent social worker Nicky let us know about CLIC Haven, so the other children and Gary’s mum could come up and see Pippa for three months. Nicky has been an absolute life-changer for us, our family could have broken down completely. CLIC Haven allowed us to be a family and it gave Pippa a massive morale boost to see her sisters and nan. You need your family around you at times like that.”
But dad Gary had to travel back and forth from Brighton to Southampton, a journey that could take anything from one and a half hours to three hours at the weekend to look after their three children and two businesses at home.
“Filling the tank with petrol would cost us about £80 which would see us through for there and back and we had to make this journey so many times. We were going through a lot of petrol. We had to be in Southampton for the specialist care, the tests, appointment and check-ups that we can only have there. We were spending a few hundred extra a month at least; it was burning a big hole in our pocket.”
At one point, they had to make the call to keep one of their businesses closed, which added to the financial strain.
“The back and forth trips and staying in Southampton had a big impact on our businesses and our other children. We have an ice-cream shop which isn’t open in the winter and a hardware shop. Gary and I both stopped working so we lost a lot of money from our businesses.
After the initial three months, the Payne family continued to make lots of journeys to Southampton, on average once every two weeks. They also had other appointments at Brighton Hospital and if Philippa had a temperature spike, they had to drop everything and go there.
“We would have been spending so much without the support from CLIC Sargent. Nicky made us aware of the benefits available and the financial support on offer. Without Nicky, we could have lost our businesses and our family could have broken down completely.
“Nikki also got us a pass for parking at hospital in Brighton; two to three trips a week was crippling us. Before we got a parking pass through our CLIC Sargent social worker we were paying £20 a day for hospital car parking. Thanks to CLIC Sargent it only cost £2 a week in Southampton and in Brighton we got an oncology park space for totally free parking. Little things like that make a huge difference, we were going to the hospital every day and the parking would have soon added up.
“If it wasn’t for CLIC Sargent and the kind people from North Star Sussex Motor Group giving us a diesel card which allowed us to do all the travelling back and forth to hospital, it would’ve financially crippled us.”
Sadly, during end of treatment tests in June 2018 , a bone marrow test showed that the leukaemia had come back. Philippa spent another two months in Southampton having chemotherapy and then she was transferred to Royal Marsden in London for radiotherapy and a stem cell transplant in October. Hayley stayed with Philippa in Royal Marsden but for Gary, the journey from Brighton to London took anything from 50 minutes to two hours. Philippa’s parents forked out for a year-long parking ticket for £100.
Overall, the Payne family estimate that over two years, they’ve spent thousands of pounds on petrol, parking, hospital food and supplies, and Gary estimates he’s travelled 200 times in total. While the family wait for Philippa to get the all-clear, they are travelling up to the Royal Marsden every eight weeks for regular tests.
“CLIC Sargent were fantastic and from the very beginning, they offered us so much support financial support. After a year, the financial impact was massive. Until you’re actually in this situation, you don’t realise the financial impact cancer has and it was very, very testing.
“We didn’t have a clue about the financial impact; it’s not one of the first things you think about when you are told your child as cancer. For us it just wasn’t a priority because you are focussed on your child, it wasn’t until our CLIC Sargent social worker put all the support in front of us that we actually realised it does have a massive impact. Travel costs can put you to breaking point.
“We would be in a lot of trouble without that support we would have lost our businesses without it.”
Philippa’s family are backing CLIC Sargent’s call for a Young Cancer Patient Travel Fund. Sign your support to ask all party leaders to commit to the fund if they become the next Prime Minister.