To put in a complaint against NHS

[Vanillaisboring666]

My beautiful 14 year old dd attended hospital Tuesday last week to have her ACE stoma reversed . It was a simple 20 min procedure that was class's as day case surgery. We arrived at 8am and she went down to theatre at 12pm , arrived back onward at 1pm . At 230 pm she was discharged . She was un comfortable but managed to walk to car . Upon getting in car began to cry saying she was in a bit of pain . I got her home and into bed and gave paracetomol as per hospital instruction. At 4pm she was in agony and sweating. Took her to A&E as day case unit advised on phone they would be closing at 8pm . Anyways 2 hrs in a&e she was sweating , breathing fast and writhing in agony. After 2 hrs a paed doc came and gave oromorph and placed her on paediatric ward. She stayed overnight and was given regular oromorph but she was still In agony . The sister the next morning said it was post op pain and told me to take her home amd have a duvet day and give paracetomol. By this point she could not walk and looked gravely I'll with sweat running down her face. I took her home and once again tucked her up in bed. At 4pm wednesday (day after her stoma reversal ) she was in absolute agony so I called gp and he prescribed oromorp and we gave it her overnight. Thursday mornine she was unable to lift her head and gp advised over the phone i ring an ambulance . Ambulance arrived (after 1.5hrs) and she was once again took to a&e . A gastronsurgeon came immediately and she was then rushed to theatre . I was signing consent forms running along corridor. It was terrifying. Anyways she ended up having a full blown laparotomy after the attempt at doing surgery laparoscopically failed. She has 4 laparoscopically incisions and a huge vertical cut down her tummy from laparotomy and also a cut on right side of tummy from her ace reversal surgery and initial ace surgery. She has been through hell. She was on itu for two days and is now on ward but is still critically ill as having temps and heart rate fast. The surgeon who did the ace reversal was never informed dd was readmitted by the ward and has profusely apologised as he said this should never have happened. He is going to be looking into why he was not told dd was back in hospital with pain 4 hrs after his surgery and why the bloody hell she was discharged in such a terrible state the next day when she was very obviously seriously ill. She is so so so poorly now and is still critically ill amd at risk of sepsis . She will be getting ct scan tomorrow as nothing is bringing down her temps . I am furious she was made to suffer such pain for 48 hrs and has ended up needing full blown laparotomy. If her surgeon had of been informed on the Tuesday he said he could have managed to do surgery laparoscopically. Instead he said her abdomen was so full of puss and poo he had to open her tummy from top to bottom. I am heart broken and not coping well with seeing how much pain she is in. I am strong in front of dd but have to go to toilet amd cry every now and then. We have a huge long road ahead to get her better but I am now starting to realise just how appallingly she has been treat by the ward who initially discharged her. No doctor even examined her before discharge and the sister said it was post op pain amd to have a duvet day and paracetomol ? I can tell the hospital is shitting themselves as they rolling over me and dh now . Even my dds consultant has admitted this should not have happened amd has apologised . He came to see dd twice a day Saturday Sunday despite it being his day off. I pray to god she recovers as docs say she is still critical and may need more surgery amd to go back to picu if her temps don't drop. Sorry it's so long and I hope it makes sense. I'm in bits and can't believe our wonderful nhs could have gotten something so wrong. A routine simple procedure has ended up with 8 hrs of surgery ,paed intensive care for two days,severely in pain child that is bed bound ,catheterised and has no clue just how serious this situation is. Her whole abdomen was filled with puss and poo and her bowel had ruptured . According to ward sister though it was post op pain and all she needed was paracetomol and a duvet day. My dd is so lovely and never complains so I knew something bad was wrong but the sister said she knew best and discharged her ??? AIBU in going to pals ????

Bed sores/pressure injuries are a never event. They should not happen, ever, in a hospital setting. That also needs to go on any complaint you may wish to make. Your poor DD! It's good that she has an air mattress. Has she been assessed by the tissue viability nurse?

She should have been turned and moved regularly to prevent sores developing as well as having her skin checked regularly. That's just basic nursing care, and I would not be happy.

This is such a dreadful situation. When I read Vanilla's latest post I hesitated to say that nurses should have been doing what she is doing, because I thought that as a loving mother she wanted to be the one that did that for her daughter. Also, she is so exhausted and stressed I wouldn't be surprised if Vanilla simply hasn't got the physical or mental energy at the moment to complain and insist she gets more support. I wish someone could be there to fight for them both. It really isn't good enough at all.

She has bed sores?!? That is totally unacceptable. I would follow advice from roses.

For my father the most effective action taken so far has been from getting the MP involved. I would recommend going down that route. We hired a lawyer to manage our complaint because I was dismissed at first. The PALS lady almost mocked me and said that coming from america I must understand how things are different in England. I was floored and told her straight that I was speaking for those who can't speak. My father was one of many who have seen poor quality care because hospital management are happy to let a few things slide to meet targets.

Our MP assigned a case worker who has been brilliant. She has advocated for my Dad at times when I have not been able to.

Please do speak up and speak to your MP.

Vanilla, please take up your husband's offer and get a night's rest. You'll be better able both to cope with this and fight your daughter's corner.

Bitter experience tells me that that will probably work better in getting the nurses to pay attention to your daughter. When you're there, they will happily leave all the nursing to you. When we were in this situation, I was basically left to get on with it, but when my husband was there they were regularly in to check on my ds, help change his clothes, offer dh cups of tea etc. And it wasn't because he's that good-looking, I think they just viewed him as an inherently incompetent male who couldn't be left in charge.

When I trained as a nurse, we would have got into a lot of trouble, if we had let a patient develop a bedsore! Pressure area care is part of basic nursing for any bedbound patient.

I think the NHS is stretched to breaking point, and things like this are the result. For years, resources have been cut and cut again, and NHS staff have done more and more to cover the deficits - but there is only so much they can humanly do.

Poor Vanilla is barely functioning I fear. All her resources are concentrated on caring for her daughter and she's getting no rest. If she has time to read these posts at some time maybe she could get her husband to contact the people suggested.

The nurses seem to be only too happy to leave the nursing care to Vanilla, even when the patients is so seriously ill. It's unacceptable.

Right now I'm in Wimbledon vanilla. If you are anywhere near (25/30 miles). I'll happily come and advocate for you/look after you for a couple of hours.

So relieved to hear DD is starting to recover. She is so fortunate to have such a lovely supportive Mum. But sleep deprivation is terrible and maybe it would be wise to take up DH's offer?

Is DD on IV antibiotics? Watch out for wound infection especially if not.

She has one bedsore on back of left knee about a 50p size and one on her left elbow about 2 50p size together . I dnot mind helping dd to the toilet etc or changing her bed etc and doing the other stuff as she is so fragile at the moment and when we buzz the nurse it takes them former to come so I just unplug amd disconnect her drips and iv's and oxygen and tootle her to toilet. The pain nurse who pops in twice a day is so so lovely and is who spotted the bed sores and insisted she got a different bed . For 48 hrs solid dd lay in the same position and was not once moved . I never even thought about bedsores so it's my fault as well . She is a bit better this afternoon and has managed to eat some grapes and some bread sticks . Still has diohrea but she is on 3 antibiotics so docs say it's most likely those . She is having more bloods done now to check everything is heading in right direction and her inflammatory markers are coming down. Such a roller coaster of emotions . I don't cry in front of dd but when I have my mornine amd evening shower I let rip and have a good cry . Today I have been doing my adult colouring book which has helped relax me . I'm sorry if I'm moaning . You guys have Been so lovely and really kept me going. Thank u xxx

@ohtheroses thank you so so much . We are a tad far

It's not your job to know or think about pressure sores. Preventing pressure injuries is basic care in a hospital environment. Please don't use this as a stick to beat yourself with. It's appalling that you are having to double-check to ensure that your DD's basic care needs are being met. That is not a criticism of the individual members of staff, who I'm sure are doing the best they can, but is indicative of a care environment where there are not enough nursing staff to look after the patients they have. When you're feeling up to it - i.e. not now! - this needs to go into a formal written complaint so that it is raised with hospital management to ensure that the basic care structure is in place.

Is she still sweating heavily? If so, there are mattress covers that will actively draw away the moisture to avoid further skin breakdown. If she doesn't have one of these, get your DH to push for her to have one ASAP. Example of what I'm on about.

Ages to come not former ? Darn phone

Thanks Thomas will look into the bed covers . Our neighbours sent us in 4 fantastic ice packs which are large squares and the stuff inside freezes to a slush like consistency so they are soft. I wrap them in pillow cases and place one under her back , one each down her sides and she holds one on her tummy or on top of her head. They have been a god send xx

It is NOT your fault she has pressure sores. Please don't feel guilty. The nursing staff should not have allowed this to happen.

I really hope your daughter gets better soon

Vanilla, the bed sores are not your fault at all! She should be being nursed. You are doing SO much, what are the hospital even doing to support you?

After the fuck ups you've had, I would've thought they'd at least be trying. I'm so sorry, and you're doing an amazing job.

You know what? I would contact PALS now to facilitate better communication and documentation of this immediately.

Bed sores were a major issue twenty years ago when I trained, its basic care. It was never allowed to happen.

vanilla not your fault at all. The hospital was rated outstanding by the CQC in 2016 !

I hope you don't mind but I've just reported your post to ask MNet to delete it or redact the hospital name.

With love

Oh lovely, as PP's have said, it's absolutely not your fault your DD has developed pressure sores. She should have been assessed as being at high risk for developing them & put onto the appropriate care pathway. My usual hospital (as it were) assesses risk of patients developing pressure sores when they're admitted & if you're being assisted with personal care (as your daughter should have been) they'll check & document as necessary - & treat, clearly, if there are any issues emerging, they don't just merrily note down someone's developing the things & leave it there!

Can you speak to the Ward Matron about this? They should, well, sort things out so your DD receives an appropriate level of care. Has she seen a dietitian by the way? Is she being weighed? A dietitian prescribing fortisip (or whatever the hospital uses) is vastly preferable to your DD needing an NG tube because her weight loss has been so drastic & she's unable to drink the required amount of kcal/needs something more nutritionally complete. (TBH am not too sure what's in fortisip/fortijuice etc nutrient-wise as they'd all kill me. No idea why nobody's made an actual proper dairy-free one yet. Though tbf it'd probably be rancid so I'm not devastated about this gap in the market...)

OP I couldn't just not reply to this. Think about taking legal advice even at this early stage. It's not thinking about suing to get a cash "windfall" but specialist lawyers provide advice on how to work through issues with the NHS to get the best outcome for your daughter. I am a lawyer & work for a firm with a big patients rights team but I don't do that kind of work myself. However I've seen that They can do so much to help with your financial situation if you have to take time off to care for your daughter etc and if she needs follow up care too. Plus it sounds as though these people need to make your dd a top top priority and their involvement makes that more likely too as they'll be a bit scared of you. The issue with the internal NHS complaints system is it's so reactive it's not going to help you right now which is when you need it.

Also sending you a big hug and a big pair of boots so that you can stand in the ward and stamp your feet until someone gives your dd the joined up proper care that she needs & deserves every single day. Off outside to put my tin hat on now.

The day case surgery she had done was supposed to be the last time she ever needed to see her consultant as it had meant the condition she was initially diagnosed with had been cured. Now , however she has a lifetime risk of bowel problems amd will be seen every 3 months . Not at all what we had hoped for. It's gone from her being cured to now having an even worse condition than before ?? So unfair and all because she was not treated or too seriously on her first re admission .x