11 year old Ben Baddely needed vital spinal surgery to kelp him to walk again and relieve the intense pain caused by his cerebral palsy. The NHS cancelled the surgery and pulled the funding 4 days before it’s date leaving Ben’s family having to raise over 11k to pay for the operation, through their fund raising and a kind businessman’s donation they were able to pay, however the NHS classed this as a private donation meaning Ben’s family would have to find the money for his after care, Walking The Breadline spoke with Gary Baddely about the enormous struggle this has caused for the whole family:
How has life been since this ordeal started with the NHS, it must very difficult to cope under such extraordinary circumstances.
It has been really difficult. We have the added pressure of trying to raise an extra £2000 a month, organise fund raisers and help with our sons rehabilitation. By the time I get in from work we have physio to do with Ben, then we have tea and try to spend a bit of time with Ben and his younger brother. They then go to bed and we carry on with Ben’s appeal trying to raise awareness and help with fund raising. By the time I to get bed its about 1-2am then I’m up at 5am for work. Obviously not much time for ourselves and a lot of pressure on both of us.
Can you take us through a timeline of events, how did this start (the NHS issue) and is the situation any closer to being resolved?
Basically my wife, Amy had a really bad birth. Ben had a lack of oxygen during the birth which left him with scarring on the brain causing cerebral palsy. Amy was left in a wheel chair for over 6 months.
The cerebral palsy left Ben with severe tightness in his legs and back, spasms in his muscles and severe pain 24 hours a day. We were referred by norths staffs hospital to Nottingham for a procedure called SDR (selective dorsal rhyzotomy). There are only 5 hospitals that perform the operation. The surgeon takes away one of the vertebrae in the spine. He then severs a few of the nerves that are causing the tightness. This takes away the tightness and the pain which then leaves him with 2 to 3 years of rehabilitation. We went to and from Nottingham for nearly 2 years of tests to make sure he was a suitable candidate. We went to the hospital the week before for his pre operation to see one of the specialists. Everything was fine for the operation. We were really excited as this is a life changing operation. On the Saturday (4 days before operation and 2 days since been hospital) we received a letter saying that the NHS had pulled the funding and the operation would be cancelled. You can imagine how devastated we were. After weeks of complaints to different NHS and government departments we were given 3 options:
1.To wait and see if the NHS would change their funding in the future.
2 .To forget about it and leave Ben in pain for the rest of his life
3 .To pay the last 10% needed to complete the operation.
Obviously we couldn’t leave Ben in pain for the rest of his life. Also as he got older the tightness would begin to bend his bones leading to operations to straighten them and leaving him in a wheelchair needing a lot more care.
We decided to raise the last 10%. £11,440 in total. Which was mostly donated by a kind businessman. This was then paid into the NHS for the surgeon to carry on and finish off the last part of the operation.
After Ben had his operation we were then informed because we had paid into the NHS it was now classed as private and Ben would not be entitled to rehabilitation. It is just over a year later. Ben is going from strength to strength. He has stopped wearing his body brace and splints. He goes to mainstream school and is no longer in constant pain. He is enjoying life .
How has the public reaction been? I know you have reached out on social media and in various news outlets, have people been supportive?
The public have been fantastic. We have had a lot of support locally and nationally. Met some really nice and kind people. We have had a few nasty people making nasty comments which was a bit upsetting at first. Now we just ignore them. Comments like “why are you trying to change your child?”. That we are ‘selfish’ and ‘lazy’ for not wanting to look after him.
The fact is we don’t want to see our son in pain 24 hours a day. If we can give him a pain free and better quality of life we are going do whatever we can for him. Thankfully there are not many like that.. Overall we can’t thank the public enough because their support helps get us through it all.
Has anyone at your local NHS trust attempted to explain why they seem to think your son Ben’s operation was ‘private’ when a kind local businessman paid them directly to carry it out?
They try to say that because we paid in to the NHS it is now classed as private. They don’t seem to understand or care that we only paid the last 10%. They did the rest. We still had the same hospital, same surgeon and nurses nothing changed except we paid the last 10%.
The surgeon and nurses were fantastic. We couldn’t thank them enough. They just had their hands tied by people that control the finances.
In the absence of NHS support how is Ben getting the vital physio and monthly rehab he needs?
We pay for this privately. She comes 3 times a week and works between us and the school. She gives us set routines to do several times a day and changes this every time she comes. He has constant physio and strengthening. We go to Wolverhampton every Saturday for body and muscle conditioning. This is all paid for by doing a lot of overtime, fund raising and donations.
What can we, the readers do to support?
You can help by taking the time to look into Ben’s story, give us your support, spread Ben’s story and help with ideas for fund raising. The more people that are aware of this will will help Ben and the other children that are going through this.
Pictures taken from official facebook campaign page ‘Help Ben walk without pain’