Help Lucy get her life back

Hi, My name is Nikki, and I am a mum who desperately needs your help.

My 13-year-old daughter Lucy has been in severe constant pain for nearly 3 months.

The NHS is letting down my daughter terribly, and we're at our wit's end, so we have decided to try and raise money to be able to go private (even though we really shouldn't have to, but I can't bear to see her in pain for much longer)

This is our story...

Lucy has been in severe constant pain on her lower right side since 12th September; she was initially given antibiotics for a water infection, but when the pain continued to get worse.

Our GP sent her to the children's ward at Bolton Hospital with suspected appendicitis. They did bloods which came back normal and sent us home with basic pain relief, telling us to come back to the ward if it got worse. It did, so we came back the next day, bloods were still normal so they decided to book her in for an ultrasound on the 16th. The ultrasound was ok; however, the appendix couldn't be seen and Lucy's pain was getting worse. They kept us in for three days to monitor and to have an MRI scan, which was done on 20th and still wasn't showing anything.

We were sent home even though Lucy was still in extreme pain with codine, ibruprofen and paracetamol with the words 'I think you will be ok' .

Lucy hasn't been ok though and has been in pain every single day.

After a month of this pain, we ended up back at A&E on Wednesday 12th October, as Lucy was in agony. Again nothing was showing in bloods but the doctor agreed we needed further investigation so booked us into the hot clinic for Friday 14th and we went home.

The next day, we got a call from the doctor asking us to go back to A&E as the clinic he had referred us to was only for adults: He assured us we wouldn't have to wait and he would get us referred to the appropriate place, we were there for another 5 hours! We saw the surgeons who said that really what she needs is a laparoscopy but the surgical team at Bolton only dealt with the removal of the appendix, so she referred us back to paediatrics and we were given an appointment for the following Monday.

We leave again with a child in extreme pain but no further on.

Monday morning (17th) we see the consultant on E5, she does a very thorough examination and agrees to admit Lucy for further investigation and laparoscopy, she refers us to the surgical team (Which I assumed was a different surgical team - Wrong!)

The surgical team came to see us Monday evening, examined Lucy and said there's nothing we can do; we can't do a laparoscopy here. She needs to be referred back to paediatrics (do you see a pattern here?)

Lucy is getting more and more frustrated and just desperate for someone to help her at this point so we ask how to make a complaint as we had been back and forth between the two teams, three times since the first time we were in and it was just getting ridiculous now, the matron came to see us, assures us he will get the head of Paediatrics to sort everything out the next day.

The next day, the surgeons turn up again and tell us the same thing (I kid you not). Later we got to see the head paediatrician, he told us he thinks it is 'probably' Functional Abdominal Pain and Lucy will just have to learn to live with the pain (Which she was hysterical about as she was rolling about in agony at the time). He goes on to say that he will refer us to CAMHS to help her with that; he asks for a stool sample to rule out anything linked with food. The next day, they told us they had mislabelled the stool sample so she had to do another one which she found extremely distressing.

On Wednesday we saw the head paediatrician again and asked about being referred somewhere else for a laparoscopy; he said the MRI ruled out 90% of things, we asked about the other 10%, and he agreed that only an internal examination would rule out other things, the 2 main areas of things that wouldn't show up being gastro related or gynae.

The team at Bolton, spoke to doctors at St Marys (Gynae) and Manchester Children's Hospital (Gasto) who both agreed to accept Lucy as an urgent referral, but we were told that could still be 4 weeks. They advised a different Medication regime, Lucy now takes Omeprozole, Peppermint oil (x 3), Paracetamol, Diclofenac/ codine (when needed), Buscapan and Amtryteline daily (she is only 13!) which personally I feel is a much bigger risk than opening her up to investigate the cause.

Anyway, we went away thinking at least we were being referred on and would get some answers but 2 weeks passed and we hadn't heard anything (apart from a letter from CAMHS turning down the referral) So I emailed Manchester and my husband, Chris was at St Marys for an appointment so he asked them about the referral while he was there.

This is where our world has once more imploded, I received an email from Manchester telling me they don't consider it urgent and there is a 10 month wait, Chris went to St marys to discover the gynaelogical department hadn't even received the referral (luckily Chris had a copy with him which he insisted they photocopied and sent through the internal post)

This is just unacceptable, my daughter is in so much pain every day and she is so distressed that no one cares enough to help her, she has only managed 2 hours of school this week and that left her on the floor screaming in pain. She has no life at the minute and it's really not fair.

We really need answers and a treatment plan that works asap and sadly I think the only way we will get this quickly is by going privately so we are hoping to raise enough money to help us to do this. Lucy has missed most of her first half term in year 8 and her mental health is suffering alongside the physical pain which she finds unbearable.

She really needs a laparoscopy to find the cause of her pain (which will show the 10% not seen on MRI), but this will cost at least £6000 alone, money we just don't have. My husband Chris has just been made redundant, so as with most households, we were already struggling with household builds. We don't have any facility other than this to try to raise money to investigate Lucy's unexplained severe constant pain.

We appreciate any help you could provide so we can get answers and hopefully successful treatment for Lucy.