"Breastfeeding Support as an Adult Inpatient"

About: Liverpool Community Health NHS Trust University Hospital Aintree / General surgery

(as the patient),

Monday in January 2014: I attended my GP with pain located at the bottom of my back just below my tail bone, the area was sore to touch and was of a red colour, before I could even explain myself my GP told me that I have a A pilonidal sinus/Cyst. This is a small hole or "tunnel" in the skin.  It usually develops in the cleft of the buttocks where the buttocks separate. (NHS. com) I was told that I would need antibiotics and this would sort the problem out. I left feeling relief and thinking within 48 hours my painful behind will no longer hurt. I was prescribed Flucloxacillin for 7 days 4 times a day, along with ibuprofen and paracetamol.

Tuesday: Although I was on pain relief the pain was getting worst as the day went on. As a breastfeeding mummy I couldn’t feed my baby girl without being in tears which resulted in me being in bed with a hot water bottle and my other half would tend to the baby and bring her to me for feeds. I physically couldn’t do anything without crying out in pain. Mid-afternoon there was very little pain until the pain relief had worn off. Tuesday evening I again was in tears due to the pain and sleep was very little.

Wednesday: Today the pain was unbearable and I felt deflated and upset as I was promised 48 hours of effect of the Flucloxacillin would have occurred by now. With having a baby who is exclusively breast fed I was trying really hard to cope and not have to worry about going to the hospital but after talking to a GP who I know through a social media website she advised me to attend hospital as soon as possible. At 7pm after being in tears again I decided I needed to go but thought I would ring Aintree A&E to see what the waiting time was currently and if I would be seen quicker due to having a 18 week old baby. I spoke to the A&E consultant on at that time called Nina who asked me to explain my problem and she explained that she would need to talk to the head surgeon and get back into contact with me. With a call back within 15 minutes NINA told me that the surgeon whose name I cannot remember had sympathy with myself and my situation and explained that if I was to attend Ward 1 Surgical Assessment Unit (SAU) tomorrow before 8am I would be seen early / first as I’m on the list due to me having a baby and needing to get back to her needs. Finally she told me not to eat anything from 6. 30am so I had a little dinner once of the phone that evening 8pm. Today was also my birthday!

Why were my expectations not more properly managed with regards to when I was likely to be seen and for how log would I be away from my baby?

Thursday: 7: 45am I attended the SAU stated my name and the nurse said I wasn't on the list. I explained I spoke to a consultant yesterday and followed her instructions.. she had another look in the same pile she just looked at and again said no, she went on the explain that I needed to go to triage and get referred to the SAU ward but before she could finish I began to get upset again I couldn’t bear the thought of waiting in triage or even sitting down and leaving my little girl for a long period of time this needed to be sorted to which another nurse said that’s fine but If I have an emergency they are more important than you ( Which I agree but there wasn’t any need to be so rude) he promised triage would take 2 minutes and I would be seen quickly as they do have a spare bed. Walked down to triage/ A&E and spent 15 minutes giving my personal details to the receptionist, but I didn’t have to be seen in triage I was told to go straight back up to the SAU ward. I must admit once being admitted back to the SAU I was seen very quickly, blood taken, questions asked and 3 doctors who came to assess my pilonidal cyst which I was told was an abscess and was more serious than that cyst and would need draining and lancing as well as removing. Surgery would take 15 minutes I would be put under a general anaesthetic.

10am, I was taken to a room with other ladies in and told it was just a waiting game now. I asked the nurse if I was safe to breastfeed my baby through the day on the drugs I was given and she said “I'm not 100% sure but I would say not as your on codeine”. Feeling upset that I cant feed my baby me and my other half agreed for that time being she would be put on formula, I felt awful and like a failure of a mummy.

Why were alternative medications not investigated at this point? Why was codeine given when breastfeeding was clearly a priority for me?

3pm- anaesthetist came to explain surgery to myself and ask a few health questions- this made me believe I was soon to be seen.

5. 30pm – I still hadn't been seen, my patience was thin I was so hungry but was told that I could have eaten this morning but then that would have been it.. no water to be drunk either only little sips with my painkillers which I was given throughout the day. Codeine and paracetamol which worked a treat maybe due to the fact I hadn’t eaten for nearly 24hours. I begged a nurse to find out if I was to be seen soon otherwise I was going home with the pain relief id been given throughout the day, she told me that if I'm not seen between 6. 30/7. 30 she would send me home and put me on the list for tomorrow but it could be up to 10pm tonight before I'm seen. There has been a few traumas through the door. I'm in tears as I'm still in pain but hadn’t seen my baby and I couldn’t express because I was so upset, but also I didn’t feel like I was engorged.

Why was I not given any advice with regards to how often to express in order to maintain my supply?

Sometime after this I was given a 2. 5ml dose of oramorph.

6. 30pm I was finally taken down to theatre for my surgery. I woke crying in pain and was given morphine to help with the pain, I was then taken back to the ward and recovered very quickly and was showered with endless supplies of tea and toast. I was also told I would need to stay in overnight to make sure I didn’t take a funny turn. Pain relief being given was 2. 5ml of oramorph and painkillers every 4 hours.

11. 30pm I was given 2. 5ml of oramorph and painkillers and I began to express with my electric pump which was hard work as I was still very fragile and in pain when moving and could only lay on one side and the plug for the pump was on the opposite side, as I pumped the nurse came running in and told me I cant pump here its too loud! ! ! ! ! Not only embarrassed but shocked I asked her if she could see if the maternity ward had a hand pump. She said why would they have one they are a ante natal ward so that’s before baby but she would ring and ask, in the mean time I was asked to go into the family room where I would stand crippled in pain trying to express and hidden away…. She did put a do not enter sign on the door!

Why was i made to feel guilty and like an inconvenience for expressing in order to maintain my supply of breastmilk and guard against mastitis?

Why was i not helped to find a way to express comfortably?

Why was a quieter hand pump not found for me if my electric pump was indeed inappropriate for the ward?

Friday: Woke up very sore and engorged due to not pumping enough milk during the evening, again moving from the bed was difficult but had to be done as milk needed to be expressed.

Again, why were none of the staff concerned about my risk of mastitis from not expressing enough, regardless of the maintenance of my supply for continuing my breastfeeding journey?

Pain was manageable but I felt like I needed something stronger, 10 minutes before dressing I was given 2. 5ml of oramorph. before I knew it a nurse arrived to pack my wound, she explained it might be painful but needs doing every single day. Before I knew it she was taking the dressing out and I was screaming I did ask her to stop as I was making so much noise and her reply was “ oh come on you’ve had a baby this is nothing” she finished taking the dressing out but for her them to pack it with more and slapped a sticky dressing over. She looked at me disapprovingly and said “ you’re going to need to stay in overnight if its that painful it shouldn’t be that bad”

Why was I treated with so little respect or compassion?

After a few tears and pulling myself together, pain relief again throughout the day way 2. 5ml of oramorph and painkillers every 4 hours. I did ask if I could have anything else as the pain relief wasn’t working to well to be told no because your breastfeeding. So another night was spent away from my baby and my expressed milk was being thrown away as they said they didn’t have anywhere for them to store it ( A fridge? ) but it was not clear as to whether or not it was safe to feed my baby or not.

Again, why were none of the staff concerned about my risk of mastitis from not expressing enough, regardless of the maintenance of my supply for continuing my breastfeeding journey?

Saturday: Routine doctor came round today looked displeased as to why I was still in the hospital. He said I should go home today with cocodamol and oramorph and for a district nurse to be sent out. I replied with I'm breast feeding my child is this ok. Yes I was told. The nurse I pulled to one side and asked her if there was anything stronger I could have before my dressing and she said she would go and ask. With her returning she told me the doctor has said this is all your allowed, I panicked and got scared as the pain wasn’t to bad but I needed something stronger before the dressing as it was horrendous the day before and I was not going through that pain again. She said I can get the doctor and will see what he says. He came to me and explained that I told them I was breastfeeding so this is all that was allowed. He wouldn’t listen to me when I explained that yes I was breastfeeding my child but I have been talking to someone I know on twitter who had spoken to a number of people on twitter but specific people who were professionals in the industry when it came to medication and breastfeeding and upon showing him a document he spoke sternly and said “pharmacy said this is what your having so that’s all your having I’m not willing and will not up your dosage and this is not reliable”. And walked off.

The breastfeeding professionals i was in contact with were well known experts.

Why are your doctors and pharmacists not aware for the breastfeeding network's drugs in breastmilk helpline and their expertise.

Http: //www. Breastfeedingnetwork. Org. Uk/detailed-information/drugs-in-breastmilk/

Why was i dismissed out of hand when i tried to discuss the advice i was being given by breastfeeding professionals both online and over the phone?

The nurse arrived back and said listen in understand your in pain but your breastfeeding and we can only give you so much, I asked her if I wasn’t breastfeeding would you be able to give me more and she said oh gosh yes you could have 5ml of oramorph and codeine as well as painkillers! ! ! She said you've done so well feeding your baby up to 18 weeks you've given her the best start in life but your in pain.. I'll leave you to think about it.... I was heartbroken, I didn’t make any sense at all… my baby girl was at home on formula and my milk being thrown away so whilst i'm still in hospital why could I not be given the full 5ml orapmorph, codeine and painkillers? .

Why was it allowed to come to the point where a nurse was encouraging me to give up breastfeeding?

Why was it presented to me as a choice between breastfeeding and pain relief?

The nurse returned and asked me if I was ok to do my dressing and would bring gas and air. 10 minutes before dressing I was given 2. 5ml of oramorph. With the gas and air again I was screaming and crying I think I had worked myself up due to it being so painful the very day before. The nurse was concerned about the pain I was still in and said you might be best staying in again just in case you need gas and air tomorrow. I begged the nurse to speak to the doctor about giving my more pain relief and explain to him that I'm not feeding my baby as I was staying in again. She said she would see what she could do. That early evening I approached the doctor who I had spoken to before and asked him if the nurse had spoken to him or if I could have a quick word. He stood quickly and said neither sorry and strolled off quickly! I couldn’t believe it! Nobody was listening to me I'm in pain and I miss my baby girl and just had enough. The evening nurse in charge Marie walked me back to my bed and sat with me and asked what the matter was I explained all to her and she said you can have oramorph more often if your only have 2. 5ml so I can give you 2. 5ml now then another 2. 5ml if you need it in another couple of hours. she was fab she brought me tea and toast calmed me down and true to her word brought me oramorph at 7pm then again 9. 30pm and my pain instantly was less.

At this point I was still struggling to express breastmilk as I was continually told that my electric pump was too noisy, and I was in too much pain to use it in any case as I could only lie on the side that was away from the socket. I had not been able to access a hand pump from the hospital so a friend of a friend had to come into the hospital on the Saturday evening to lend me her hand pump.

Why is appropriate equipment not provided for breastfeeding mothers?

Sunday: Today I thought to myself I must get out of this hospital but only if I can cope with the dressing, with being given oramorph closer together I told myself I must grin and bear the pain to get out but should be more easier due to medication being given closer. The nurse giving medication out in the morning was very rude she gave me my painkillers and oramorph and when she arrived I asked her if she would be ok to come and give me this again in the next couple of hours she said no every 4 hours I explained last night I was given it closer she said no every 4 hours. The same nurse as the day before was on shift again and I explained I was given oramorph closer together last night and she said oh yes we can do that but.. if I give you some now then in the next couple of hours ill give you some more but then ill come and do your dressing. 4 hours passed and no oramoprh until this time. The nurse came without gas and air and did my dressing I must admit It wasn’t too painful so was happy to ask her to send me home. I was discharged very quickly and was on my way home with painkillers and oramorph which was to be taken when needed 2. 5ml though. And told a district nurse would be sent out to me everyday.

Monday: 12pm and no sign of a district nurse. I rang the hospital and spoke to the nurse who said she had sent of my referral to them. 4pm I rang my district nurse office to be told no paperwork was faxed through and they cant send anyone out without a referral. I rang the hospital back and asked them to re-fax my information to the number I was given which was done. 5pm my dressing was weeping and was in need of changing but having a call from a district nurse he explained that he would send someone out this evening but asked If I was given ribbon from the hospital I said no just my medication he wasn’t happy and said they I was to have been given specific dressings ribbons due to the injury I begged the nurse to come out this dressing needed changing. his response was he would check if he had any ribbon in the offices and ring me back. Rang back 20 minutes later to be told he didn’t have any and could I go to the walk in centre I said no this was not realistic with having the baby and would not be happy sitting waiting. I offered to go to the hospital and collect the specific ribbon and the district nurse was happy for this arrangement (surely it would have been easier for them to have gone? ) hospital had ribbon but told me to tell the district nurse it needs cutting and is in a square? With this information I rang back the district nurse who told me point blank this was not the correct ribbon and he was not willing to send anyone out to me until the correct ribbon was used (this was in case some ribbon was left in then they are reliable for this) so he would send someone out first thing in the morning. I wasn’t happy I was told this dressing needed doing every day and I was now worried infection would occur.

Why was i sent home with the wrong dressings and why was it up to me to correct this mistake?

Tuesday: District nurse arrived at 11. 30 and took some notes and wrote me a prescription for the correct dressings and then dressed my wound. She sympathised with me and explained that she was very sorry for me as the hospital had packed the dressing far to tightly I would only need about 3cms of ribbon and she pulled out 10cm. dressing was cleaned and packed and with 0 pain.

Why was my wound packed far too tightly?

Why, despite it clearly being a priority for me from the start, and despite the importance is has for my health and that of my baby, was breastfeeding not prioritised by the hospital in any way?

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Responses

Response from Aintree University Hospitals NHS Foundation Trust

Hi Gina, thank you for leaving your comment, and for taking the time to raise your concerns.

Our Patient Advice and Complaints Team recently responded to your complaint dated 7th February 2015 and we assume you have now received our response. If you feel your concerns have not been fully addressed, please get in touch with our Patient Advice and Complaints Team who will be happy to assist you further.

You can contact our Patient Advice and Complaints Team by emailing complaints@aintree.nhs.com, by calling 0151 529 2400 or by writing to:

Patient Advice and Complaints department

Aintree University Hospital NHS Foundation Trust

Lower Lane

Liverpool

L9 7AL

Alternatively, if you remain dissatisfied you also have the option of contacting the Health Service Ombudsman regarding your complaint, as detailed in our response dated 7th April 2015. This service is confidential and free. Further information about the Ombudsman is available at www.ombudsman.org.uk.