Response from GP Complaint letter

Our GP responded to my following my complaint letter and meeting with them:
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Dear Mrs McDonald,

Thank you for attending the meeting last Monday which enabled us to discuss the issues raised in your recent letter. I hope you found the meeting helpful, and that it illustrated that the practice has taken your complaint seriously, and has changed certain procedures because of the issues you have raised. We have also arranged training opportunities for practice staff.

At the meeting you agreed we should address your points in groups as several of them were related.

Review of drug doses: Points 2,3,4,5,6&7
We discussed the practice procedure regarding review of repeat prescribing. I have since had a discussion with colleagues and we will increase the frequency of the review of repeat drugs in infants by adjusting the computer reminder settings. As we discovered there were occasions when a doctor did not change Matthew's prescription as advised by the hospital, or by a telephone enquiry from yourself. The practice can only apologise for this, and our recent practice meeting increased vigilance in dealing with hospital letters and prescription changes was encouraged.

Messages via reception: Point 4
It was unclear from our records how the failure to change a drug dose had come about. All of the practice team have been reminded of the essential task of recording all encounters accurately.

Messages via Health Visitor: Points 5&6
Dr Anderson and Debbie Rankin our Health Visitor appeared to have had discussions about Matthew which were not recorded. Good record keeping has been emphasised and Debbie has been reminded that she can attend or weekly team meeting, which is munuted with any concerns about patient care.

Omeprazole suspension availability: Point 8
We discussed the reasons why your request for omeprazole suspension was initially refused. We are strongly encouraged to prescrube from a limited formulary unless there are specific circumstances which necessitate that we deviate from it. In general, a hospital letter explaining the reason can be helpful to us in making a case for a "special request." Arrangements have now been made for Matthew to have this prescription, should the hospital cease to prescribe it for him.

Vitamin Drops: Points 9, 11, 12 & 13
Vitamin drops are generally not prescribed routinely (although they are available) for babies who are breast fed after 6 months, as they are either available via the Healthy Start Scheme or at low cost from Community Health Clinics. This information was not adequately explained to you by any member of our team, so we have arranged for an infant feeding specialist to attend a training event for our team in early March 2010, to ensure we are all familiar with the latest guidelines.

Advice from reception: Points 10, 16, 18 & 19
Your concerns have been noted and staff training on these matters has been undertaken.

Breach of confidentiality: Point 14
This matter has been addressed wtih teh member of staff concerned. Further staff training is planned to reinforce our procedures with regards to confidentiality. Please accept our apologies for the lapse which occurred in your case.

Prescribing to breast feeding mothers: Point 8
The practice has begun to use a code on patients' records which indicates they are lactating. This should help to prevent the error you experienced re-occurring.

Call back from GP: Point 17
Receptionists have been reminded that if a patient requests a GP to call them back this should be recorded as a telephone appointment, rather than a prescription request as happened in your case, when you had a query.

Call back from reception: Point 20
The comments made by the receptionist caused you concern and uncertainty. Her comments were intended as a fail safe mechanism. We have alternative procedures to deal with messages which could have been advised and given you better reassurance that your enquiry would be handled.

Midwifery care: Point 1
I did not investigate this matter, but would be happy to advise you about the complaints procedure for midwifery care if you wish to proceed.

Thanks again for attending the meeting with myself and our Practice Manager. It was good to see Matthew too, looking well.

I trust you are satisfied with the outcomes from this complaint, and would appreciate if you would please confirm in writing that this is so. If, however you have any further questions or concerns please let me know and I will investigate them also. Alternatively, you have the right to approach the Scottish Public Services Ombudsman using the contact details on th leaflet I provided you with at our meeting if you feel your complaint has not been handled to your satisfaction.

Yours sincerely,

Dr. XXX

GP Complaint Meeting

Well - it's done.

Mummy and Gran went to the GP surgery to speak to meet the GP who handles the complaint (not the one we complained about, to clarify). She was very nice and, more to the point, very apologetic.

The GP opened the meeting by agreeing that there were - clearly - several valid points that required to be addressed.

She went through all of the points in Mummy's complaint letter, having grouped them into categories:

• Review of drug doses
• Messages via reception
• Messages via Health Visitor
• Omeprazole suspension availability
• Vitamin Drops
• Advice from Reception
• Breach of confidentiality
• Prescribing to breastfeeding mothers
• Callback from GP
• Callback from reception
• Midwife care

Review of drug doses

This category covered the several failures to review Matthew's dosage and to update his repeat prescription. The investigation that was carried out did show from the file that Matthew's dosage was not checked when I asked and that his record was not updated after his dosage was increased at the hospital. It was nice to see that the file backed Mummy up, because she half expected it to come down to her word being accepted, or not.

The action taken as a result of this section of the complaint is that a meeting took place to remind all GPs of the importance of reading letters from the hospital and taking action where required, and to insist that they be more vigilant when prescribing to children, or issuing repeat prescriptions. In this particular case, all they can really do is apologise because it's done now.

Messages via reception

This covered the messages requesting Matthew's dosages be checked. The record shows that Mummy asked for a review once but that the same dosage was issued anyway. For the other time Mummy asked for a review, there is no record. The additional action taken as a result of this discussion is that receptionists have been formally reminded that all encounters must be recorded.

Messages via Health Visitor

This one was a bit edgy. It sounded like the GP was trying to push some of the focus back to our Health Visitor because there was no record made of the conversations between her and the GP. There was no dispute that the conversations took place but the issue seemed to be that they were not documented. The action for this is that they are encouraging Health Visitors to attend a weekly team meeting where cases - like Matthew's - can be discussed and, as that meeting is minuted, a record would be held of the conversation. Mummy agrees that this would be good, but doesn't agree that this should be the only communication between Health Visitors and GPs. Mummy feels there is nothing wrong with a short conversation on an ad hoc basis if it means things can be dealt with faster - provided someone makes a note of what was discussed.

Omeprazole Suspension availability

The GP showed Mummy the September 2009 edition of the British Formulary, which doesn't list Omeprazole as being available in suspension form. Fair enough, but Mummy went on to explain that it wasn't so much the genuine error as the fact that nobody checked. The answer, when she asked about this, might have been, "It's not in the book," but that should have been followed with, "where did you hear about it?" and, "maybe it's a special order but we can't obtain that without a hospital referral," which is what Mummy was told today. It is interesting to note, however, that Losec Mups (nasty tablets) cost around £7 per month to prescribe; Omeprazole suspension costs around £130 per month. To be honest though, Mummy and Daddy couldn't give two hoots about how much it costs. It works and Matthew doesn't scream when he takes it. The action on this one is that a special request form has been completed so that Matthew can get this in future. Not fantastic, because this fixes things for Matthew but not necessarily for someone else in future.

Vitamin drops

Mummy thinks the GP got the wrong end of the stick with this one because the discussion seemed to be around why Mummy doesn't qualify for free vitamin drops. Mummy doesn't mind paying, provided she's given the explanation as to why she needs to pay. For clarity, Matthew should take vitamins. However, Mummy and Daddy need to buy them because they're not on benefits. Fair enough. If only someone had explained that way back in the beginning, instead of telling us they had been prescribed, sending us to Minor Ailments and then telling us they didn't know we needed them. The issue isn't the paying for them; it's the needless confusion around the whole issue. The action from this one is quite good though; training is to take place for all surgery staff and health visitors, with the Infant Feeding Advisor, who can clarify this so that other people are given the right advice.

"Advice" from reception

This was regarding the wonderful receptionist who thought she was a doctor. The GP was quite understanding and agreed that receptionists should not be providing medical advice. She felt that the comments were probably meant to be offhand, but Mummy stressed the point that people call a surgery for medical advice and do not necessarily know what they should disregard. Mummy knew that they were talking rubbish, but that isn't the point. The GP agreed. The action on this is that as part of the receptionists' training they will be reminded not to give medical advice or ask more questions than they need to. The only questions they should ask are to allow them to prioritise calls.

Breach of confidentiality

This was probably the one that set alarm bells ringing when the letter arrived. The GP agreed fully that this should never have happened. The receptionist concerned owned up when asked and was really sorry. She realised immediately that she should not have given Mummy's prescription to Gran. All staff have been reminded of their responsibilities to confidentiality. As expected, the receptionist thought, at the time, that she was doing Mummy a favour. To be fair, on this instance it didn't cause any harm and did save her picking up the script, but clearly this was not meant to happen and the GP agreed.

Prescibing to breastfeeding mothers

This one was interesting. The surgery has the option of recording a code on Mummy's (ANY Mummy's) file to show that she is breastfeeding, to prevent drugs being prescribed which shouldn't be. However, this code is not used, which is why Mummy was prescribed a drug she shouldn't have been. The reason given for this was that by the time Mummies are seen for their postnatal checkup, many of them have given up breastfeeding for a variety of reasons. Mummy thinks that's very sad but it isn't a good reason to not use the system that is already in place. Let's face it - we pay our contributions so that these computer systems can be purchased and we expect them to be used. Mummy told the GP that having fewer people breastfeed makes it even more - not less - important to check before prescribing. They agreed and the codes are to be used in future.

Mummy also pointed out that she should have had the opportunity to speak to a doctor to check that her medicine wouldn't react badly with Matthew's. The GP didn't seem to have thought about this before, agreed and noted the point.

Call back from GP

The GP couldn't really understand why Mummy couldn't get a telephone appointment when she called about her prescription between Christmas and New Year. It was marked in the system as a prescription request, rather than a telephone appointment. It seems that this was as a result of the receptionist misunderstanding Mummy's need to speak to a doctor as a simple request for a prescription. Fair enough - these things happen. However, in future, if the receptionists refrain from asking questions that are best left for a doctor, the difference will be clearer as a GP will need to speak to the patient to find out what is required. Mummy was advised that telephone appointments are available and that she can ask for one if she wants one in future.

Call back from reception

Mummy was advised that the receptionist asking Mummy to call back after saying she'd do it was a fail safe mechanism in place in case something came up that really would have prevented her from doing it. Mummy suggested that they don't offer to call back unless they really mean they'll do it, because she would rather just know that she should ring back herself. However, this wouldn't have been necessary at all if she'd been able to speak to a GP, because there would have been no need to pass messages back and forth.

Midwife care

Well, to be fair that one was chucked in just to set the ball rolling. Mummy knew the GP couldn't really answer for that one anyway and in itself wasn't too terrible. It was just a bad start.

So that's what happened. The letter to follow this all up will be in the post soon, I imagine.

No fireworks. Mummy was very polite and fair. Writing such a detailed letter in the first place helped because there wasn't a need to go into it all at the meeting, which was a good thing because it meant Mummy didn't get all wound up again.

Mummy didn't want heads to roll. Mummy just wanted someone to take notice and make sure it didn't happen again. Like Mummy told the GP, she'll never know if these points have actually been addressed or not, because there's no way the surgery will let it happen to her again, either way, after this. There will be no way for her to know if they do it to someone else.

Let's hope not.

The end?

A couple of updates

Aunty Margaret was kind enough to send Mummy some excellent photographs from last week's ceilidh, so the blog post has been updated and you can see them by clicking here.

Mummy is going to see the Complaints manager from the GP surgery tomorrow afternoon, so there will be an update soon on that.

Wish her luck!

An update

Mummy had a call from the GP handling her complaint, and is now waiting on an appointment to discuss the points in her letter. Hopefully that will happen fairly soon and she can get somewhere with it.

Posted by popular request...

Sneak preview of the letter that is being posted to my GP tomorrow:

The Practice Manager
Dr. Dunlop and Partners
Linwood Health Centre
Ardlamont Square
Linwood
PA3 3DE

Dear Sir,

Complaint made by Marion Jean McDonald (DOB 07/03/84)
Compliant made on behalf of Matthew Daniel McDonald (CHI XXX)

I wish to make a complaint regarding the service my son and I have received at your practice. I feel you have let us down on a number of occasions and have become so angry now that I feel I must make this complaint in writing.

Matthew was born on 25 February 2009 weighing 3.54kg and started vomiting before he was 48 hours old. I told our visiting midwife every day that I felt he was overly sick, but she reaffirmed that all babies posset. I was aware of this, but had expected a small mouthful, rather than a large amount, which would result in us changing his clothes soon after every feed. She assured me, each day, that he was not doing anything unusual.

Matthew’s weight gain was slow and he did not regain his birth weight within the first ten days, so the midwife continued to visit for around two weeks. I kept telling her that I felt his vomiting might be a reason for his poor weight gain. As I am breastfeeding, the focus seemed to be placed instead on whether or not I was feeding him correctly. Matthew’s positioning and attachment were not as good as they could have been at first, but I knew without doubt that he was receiving milk because he was vomiting a large quantity of it back up.

After a visit from a senior midwife, who I think was a team leader, Matthew and I were passed to the care of our Health Visitor. At that point Matthew had not yet regained his birth weight but he was almost there and she was happy that there were no problems. Matthew was continuing to vomit excessively after every feed, and I felt his crying was that of a child in distress. He did not sound or move like a baby who just wanted a cuddle or a feed. He was clearly in very bad pain and I had mentioned this to the midwife, however her response on more than one occasion was, “Is this your first baby?”

Friends and family were now becoming aware of how unusually sick Matthew was and that he was a distressed baby. When he cried, he screamed. Nobody could console him. He wanted to feed up to hourly for most of the day and would vomit even during a feed but before he had even stopped choking on the vomit would immediately latch back on to the breast. He would not be lain down and we had to keep him upright at all times. When laid on his back he would immediate roll onto his side, at only around two weeks old. When he was in pain, his body would become rigid, he would arch his back and he would twist severely at the waist.

My Health Visitor, to her credit, first mentioned the possibility of reflux quite early on, but suggested we try Infacol first as his problem might be wind. When he failed to gain weight properly, she observed a feed and was satisfied that he was latching on correctly.

Matthew was referred to the Royal Alexandra Hospital on 3 April 2009 because of his poor weight gain. He was five weeks old and weighed 3.9kg. He was admitted on 9 April and Dr. Sharma diagnosed Matthew with infant reflux. He was prescribed one sachet of Infant Gaviscon six times daily with a milk feed and 2.7mg of Omeprazole once daily based on his admission weight of 3.92kg. The following week, Matthew had gained weight but was still very distressed and vomiting, so 1.6mg Domperidone four times daily was added.

Following his hospital discharge, the medication proved successful in that Matthew’s vomiting decreased significantly, he began to gain weight at an acceptable rate and he was not in as much pain, however it was around this time that Matthew developed an umbilical hernia, which has not yet disappeared.

At his six-week check, which took place on 15 April 2009 with Dr. Gray, Matthew’s file was updated for what had been prescribed at the hospital and it was made available for repeat order. He was also weighed and his weight had increased to 4.135kg.

In May, I contacted your surgery to have Matthew’s dosages reviewed for his increased weight, which was now 4.5kg. I did this because the Infant Gaviscon patient information suggested two sachets six times daily for infants over this weight. I was also concerned as I suspected the effective dose of each medicine would increase as the child gains weight and that Matthew was therefore no longer receiving the optimum dose. When Matthew’s symptoms started to return, and after discussing this with our Health Visitor, I telephoned the surgery to place a repeat prescription for his medicine but asked that on this occasion the GP also check the dosage and amend if necessary. To allow him to do this I provided the receptionist with Matthew’s weight in kilograms as recorded at his most recent home visit. I did this to avoid making an unnecessary appointment as the only information required was already in Matthew’s file, held by our Health Visitor.

When I collected the prescription, the dosage remained unchanged for each of the drugs, including the Infant Gaviscon. I was confused because the packaging clearly stated that a child of Matthew’s weight should be receiving double what the GP had prescribed. I was not sure about the Omeprazole or Domperidone but common sense told me that the dose suitable for a baby weighing 3.9kg would not be the same as that for a heavier baby. In fact, I know that the first thing my vet does before prescribing for my pet is to weigh the animal.

I asked the receptionist if the GP had definitely reviewed the dose, or if he had just signed the repeat prescription, thinking that he may not have received the message I had left. All the receptionist could tell me was that the note I had left had been marked as read, so as far as she knew the GP must have reviewed the dosage as requested. I was sure this was a mistake, so I asked her to leave another note.

When I checked back, the GP advised, again, that Matthew should continue with the doses prescribed at the hospital, as directed.

Matthew’s weight became a concern again 17 August 2009. He was 25 weeks old and weighed 6.13kg, having weighed 6.15kg at 20 weeks. Our Health Visitor discussed this with Dr. Anderson, however as we intended to introduce solids at 26 weeks, in line with Infant Feeding Guidelines, he advised that we simply monitor Matthew’s weight over the next month.

We followed the principles of Baby Led Weaning, and Matthew received no purees or mashed food, but rather began with finger foods. He started eating solid food eagerly from the outset and has enjoyed a varied diet since.

Matthew was referred back to the hospital on 31 August 2009, as his weight gain was, again, insufficient. He weighed 6.35kg and was 27 weeks old. Upon review by Dr. Sharma on 17 September 2009, it was found that Matthew's dosage was FAR below the effective dosage for his weight, which was now 6.7kg as he had gained weight well whilst awaiting an appointment. She advised that this meant it had been doing him no good and this explained the return of his symptoms.

I was extremely upset, because for several months I had been forcing a homemade suspension of Omeprazole down Matthew’s throat and causing him real distress EVERY morning to administer a drug that he did not want to take in such a low quantity that it was of no benefit to him.

Dr. Sharma asked if I had not had the dosages reviewed by Matthew’s GP. I felt dreadful and that I had let Matthew down because I had not demanded a third check after being told twice his dosage was correct. As Matthew’s weight was an ongoing concern, he was referred for a barium meal scan to show the extent of his reflux, however on his increased doses he was getting better again so I decided not to put him through the six-hour fasting period that was required. I considered the matter very carefully and if Dr. Sharma had felt it was absolutely necessary we would have had the test done, however on balance I feel that, had his medicine been dosed correctly, Matthew would have continued to gain weight and his painful attacks would have been a lot less frequent. I felt the extent of his reflux was apparent, as his reflux was only latent occasionally, with actual vomiting being more usual in his case.

I feel thoroughly let down. I believe my son would have continued to grow as expected, had he been correctly treated. I am outraged that this has happened in spite of my asking for a review not once, but twice.

Matthew has had his Omeprazole and Domperidone placed on repeat prescription, however despite Dr. Sharma twice writing to you to update you on his current dosages the file has not been updated. As a result, every time we collect Matthew’s prescription the packaging has the incorrect information marked. My husband placed an order for a Domperidone prescription only this morning and specifically asked that the dosage be checked to ensure it is up to date before writing it, however when I collected the script this afternoon it is for 2.7ml four times daily, which was Matthew’s dosage between 17 September and 29 October 2009. Since then, he has been receiving 3ml four times daily, in light of his increased weight.

When we later called into the pharmacy to collect the Domperidone, the pharmacist came into the front of the shop to ask if we knew what Matthew weighed. Having noted the dosage prescribed and Matthew’s age marked on the prescription, she wanted to check he was being prescribed the correct amount. I had to explain that the prescription was incorrect and that he does receive an up to date amount, which is reviewed by his paediatrician, however the GP does not prescribe the correct dosage. Understandably, she could only dispense and label what was written but was happy that the 3ml dosage is the one we should be giving him until he is weighed again on 7 January 2010.

This incorrect labelling as a result of the dosage not being updated for what the hospital have prescribed has resulted in several problems when neither my husband nor I are present to care for Matthew. We have had to explain to my mother, who routinely cares for Matthew in our absence, to disregard the information printed on his medication. Fortunately, she is prepared to take our word for this, however Matthew attends nursery twice a week and should he ever require medication while he is there, we have checked and they are unable to give him the correct dose as it has not been prescribed.

After some investigation, I discovered that Omeprazole is available in suspension form. Matthew has been receiving Losec Mups. This tablet does not dissolve properly and as a result giving the correct dosage is very difficult. Additionally, the syringe clogs and a large amount of the granules remain inside. I have no idea how much of the drug Matthew actually received. To make matters worse, the solution was grainy and I can only assume it tastes bad because Matthew refuses to drink it. To make him swallow it we had to wait until he screamed and squirt it into his mouth. He would then spit most of it out. By comparison, he would happily drink the Domperidone solution.

Once I learned that a suspension is available, I asked our Health Visitor about it on 24 September 2009. She checked at the surgery and was told that it was not. I would have accepted this under normal circumstances but as we had been let down previously I visited my local pharmacy. The pharmacist was extremely helpful and could recall having dispensed Omeprazole suspension previously, in our area. She also went on to look into how long the solution would take to be delivered and how long it would last before expiring.

When Matthew was most recently at an outpatient appointment, I mentioned this to Dr. Sharma and we now have been giving Matthew Omeprazole in suspension form for a month. He is like a different baby. He happily takes his medicine and hardly ever screams in pain now. He has been gaining weight and is finally starting to climb centiles on his chart. I cannot understand why nobody checked when I asked them about a suspension. All I had to do to find out about it was enter “omeprazole suspension UK” into Google, or ask my pharmacist. I fail to understand why it should be my responsibility to find out what drugs my baby should be prescribed, in what form and the dosage.

Vitamin drops are recommended for breastfed babies over the age of six months. I asked our Health Visitor about this and she spoke to Dr. Anderson on 17 August 2009, who agreed Matthew should get vitamin drops. She was of the understanding that it would be prescribed and I was therefore advised there was a prescription going to the local pharmacy for these. When I went to collect the prescription, I was told none had been placed.

I called the surgery around a week later to ask about the vitamin drops and was told by your, seemingly, very knowledgeable receptionist that there was no prescription written but that she would not worry about it because, as far as she was aware, vitamin drops were only necessary for premature babies. I do not know which medical school she went to but I imagine that she is not paid enough to provide medical advice to patients. Certainly, in this case, she was incorrect and should have refrained from providing any unfounded advice. I insisted that she pass a note to the GP requesting a prescription as I had been assured by my Health Visitor that one was available, however when I followed this up some days later, the receptionist read from Matthew's file, "These are not routinely prescribed. They can be obtained through Minor Ailments at the pharmacy. Infant Feeding Guidelines recommend vitamin supplements for breastfed babies."

I went to the pharmacy and asked for vitamin drops through the Minor Ailments service and explained that my GP had told us to do so, however was advised that vitamin drops are not available through minor ailments. I was asked which surgery we were at and upon telling the pharmacist was disgusted to hear that our surgery routinely prescribes these as they have been dispensed through that pharmacy in the past from this surgery. The pharmacist went on to tell us that the reason we were not given a prescription was probably as part of an unofficial cost-cutting exercise as Glasgow have agreed that vitamin drops should be provided on prescription, but that Renfrewshire have not finalised this yet. We were told that doctors do not want to prescribe vitamin drops because of the cost. It seems there is one rule for some and another for us.

As I was now worried that my son needed vitamins and it was taking far too long to receive them I elected to buy them.

I complained to our Health Visitor at our next visit, because I felt it was ridiculous that I should have to buy something that is medically recommended for my son only because my GP had failed to prescribe it. I could understand if I had not been told, initially, that it had been prescribed, or if that was an error and it is in fact never prescribed, but to discover that other families get the prescription when we do not seemed extremely unfair.

Our Health Visitor did look into the matter on our behalf, arranged for the prescription to be written and advised me that the GP had not prescribed them because he "didn't know the Infant Feeding Guidelines recommended vitamin supplements." I find it incredible that something I am aware of as a first time mother is unknown to my GP. I find it particularly hard to believe bearing in mind that the receptionist had read this information from Matthew’s file weeks prior.

It seems to me that both the apparent non-existence of an Omeprazole suspension and seeming lack of knowledge regarding vitamin drops both stem from a desire to cut prescription costs at the surgery. In a day and age when cosmetic surgery is available through the National Health Service; methadone is prescribed routinely to combat drug addiction; and alcoholism and obesity are accepted as medical conditions, this feels extremely unfair. I do not suggest that these other conditions do not require NHS support, but rather to deprive an infant of treatment that will improve his health and quality of life whilst financing treatment for more controversial conditions is ridiculous. I have heard of the “postcode lottery” but had never believed in it until this happened. It seems that even within the one practice, there is a variety of rules for the same situation and in any case, I do not believe it is, or will ever be, acceptable to lie to a patient outright, or in fact any customer.

During my pregnancy I asked my GP about treatment for a fungal nail infection but was told that treatment would not be advised during pregnancy, or indeed whilst breastfeeding. As I wanted to breastfeed my son, I did not revisit the issue until the condition became painful. I contacted a pharmacist through the Breastfeeding Network, who advised that whilst some antifungal treatments were not suitable others could be utilised whilst breastfeeding.

I went back to my GP and explained from the outset that although I was breastfeeding, I was hopeful that a treatment would be available, as a pharmacist had advised me there was.

It took several weeks for the lab work to come back and I understand that is normal, however when I called back for the results on 21 December 2009 I was told that a prescription had been written for me and that someone had collected it along with Matthew’s earlier that day.

My mother had called into the surgery that day to collect Matthew’s repeat prescription, at my request. When I asked her to do this, I had no idea my test results were back or that a prescription had been written for me and nor did my mother. She simply asked at reception to collect a prescription for Matthew McDonald and was advised there was a prescription for Marion McDonald at the same address that she could take as well.

Your receptionist had no idea who this woman was. She asked for Matthew’s prescription and understandably was given that, but she should not have been given mine. She could have been a member of my husband’s family. My son's father and I could have been separated. I believe this contradicts the Data Protection Act and breaches my patient confidentiality. My mother was shocked that she had been given my prescription without asking for it and understandable wondered what was wrong with me. Fortunately, this was a treatment for a condition she was aware of, but the situation could have been very different. I would have been outraged if my mother had become aware of my being prescribed, for example, antidepressants or a treatment for a sexually transmitted disease. When I ask someone to collect a prescription on my behalf I give them access to my private details, but I did not ask anyone to collect my prescription for me and in this instance the result was that my mother became aware of my lab results before I did, because I had not yet contacted the surgery that day. I feel this is a serious breach and demand that the matter be addressed.

The item prescribed was Terbinafine. Upon reading the patient information leaflet, I found that this is not suitable for breastfeeding mothers. I did ask my pharmacist, as I understand that sometimes this does not necessarily preclude its use, provided the GP is aware when prescribing and that it is considered reasonably safe, but I was told not to take it. I do not know how much of the drug would be transferred into my milk or what the potential side effects would be on my son. I doubt the GP who wrote my prescription knows either, since he failed to check. I do not expect him to know which of his patients are breastfeeding mothers, or even to check with every patient before prescribing because that would be unreasonable. I do expect him to check my file before prescribing when I have told him at the appointment that I am concerned about which treatment is available while I am breastfeeding.

I called the surgery on 29 December 2009 to ask for either another appointment or, if none were available, to speak to a GP for a revised prescription. I, again, spoke to your seemingly medically trained receptionist. This time, I was asked for information that I really would have preferred to give to a doctor, however as it was between Christmas and New Year and I was becoming desperate for a resolution I just answered her questions. She asked what had given me the impression that I could not take the drug and I explained that I had simply read the patient information leaflet and spoken to a pharmacist, who had checked his reference book.

She seemed surprised and advised me that this was unusual as there was a system in place to warn of potential side effects, but that it probably wouldn’t highlight risks to breastfeeding mothers or their children because so few women breastfeed. It is widely recognised that breast milk is best for babies and there are local, Scottish and national initiatives in place to support breastfeeding. Your waiting room has several leaflets and posters on display in relation to breastfeeding. In fact, figures released by the Scottish Government in May 2009 show that 40.8% of infants reviewed in Greater Glasgow and Clyde were being breastfed at the First Visit. I would suggest that this is, in fact, a reasonably large number of people.

She went on to question, for the GP’s information, how old my son was and – incredibly – said that as what I have, “obviously won’t go away without treatment,” would I consider stopping breastfeeding. I am stunned that she has enough information to tell me that. Additionally, the World Health Organisation recommends that children should be breastfed for at least two years and it is generally recognised now that failure to breastfeed put babies at risk. Additionally, it is known that continuing to breastfeed provides health benefits to me as a mother. Had this question been necessary, I believe it should have been asked with more sensitivity, by the appropriate health professional, and with full explanation of the necessity, which would include risks to my baby if I continued to breastfeed whilst taking the recommended medication. I do not know how the receptionist can possibly be expected to know this.

I was told that she would speak to a GP and assured me she would call me back, but she asked that I call her back at 5pm if she had not rung me. Either she was going to call me back or she was not, so that should not have been necessary. As it happened, she did not call and I had to ring the surgery again to discover that, once again, the GP had written me a prescription based on my lab results without bothering to speak to me first. Surely it represents an unnecessary cost to the NHS when GPs prescribe items that may not be suitable and the patient only discovers this when – or indeed if – they receive the item and are careful enough to read the enclosed literature.

When I obtained the new treatment – Tioconazole – from the pharmacy I read the enclosed leaflet and this time it said that breastfeeding mothers should only commence treatment after discussing the matter with their GP. I do not know if the manufacturer would consider the garbled conversation through a receptionist as a consultation with a GP but I sincerely hope that this was prescribed with the knowledge that it would not harm my baby. It seems unlikely, given all that has happened, and that the GP has not asked about Matthew’s feeding patterns. I also wonder if he has considered any possibly drug-drug interactions that may result from my medication passing into my breast milk, given that Matthew is taking two different medications that affect his digestion.

In summary, I feel that the only medical professional who has supported me since the birth of my son is Deborah Rankin, our Health Visitor. Had it not been for her, I feel sure that I would have become much more ill than I am. A courtesy copy of this letter has been made available to her.

I know, without a doubt, that the way we have been treated by your practice is a huge contributing factor in the way I have felt throughout this ordeal. I believe I have become depressed, mainly because I could no longer cope with what seemed like a daily battle with health professionals in order to manage my son’s illness. I have no history of mental illness in my family and have never felt like this before. Despite having an ill baby and adjusting to motherhood, the first time I felt that I really could no longer cope was the day Dr. Sharma told me Matthew had been under medicated. I felt physically sick and later that day ended up breaking down in front of a complete stranger in a Paisley pharmacy. I have never recovered fully.

Each time I deal with your practice I feel it is a constant fight to get the right treatment for Matthew or myself. I now feel as though the only way I can ensure proper care and attention is given is if I do it myself and that should not be necessary. I should not be able to find out more about my son’s condition and treatment through an internet search engine than I can from our GP.

I would appreciate, therefore, a timely response to the following points:

1. Matthew’s reflux could have been diagnosed more quickly, had the midwives paid more attention to my concerns, and those of my mother who was present during some visits.
(I appreciate that your practice may not be responsible for the midwifery team.)

2. When Matthew was weighed at his check on 15 April 2009, I was not advised that he might need an increased dose based on his new weight.

3. When Matthew’s medication was made available as a repeat prescription on 15 April 2009, there was no discussion of a review date, despite that fact that it is clear a review would be necessary as Matthew gained weight. Your Practice Information Leaflet states, with reference to Repeat Prescriptions:

“You may be asked to make an appointment to review your medication; this is in your best interest.”

It also states, with reference to Practice Rights and Responsibilities:

“We will explain the likely effects and side effects of any drug and will review your long term medication at agreed times.”

4. A review of Matthew’s medication was not made in May, despite my asking for this to be done twice, and your practice’s assurances that a GP had done this.

5. On 17 August 2009, Dr. Anderson did not review Matthew’s medication despite our Health Visitor raising concerns around Matthew’s weight and the return of his symptoms.

6. On 31 August 2009, Dr. Anderson referred Matthew to the Royal Alexandra Hospital without first asking to see him or reviewing his medication.

7. Following new dosages being prescribed by Dr. Sharma at the Royal Alexandra Hospital on 17 September and 29 October 2009, Matthew’s file has not been updated at your practice, resulting in his repeat prescriptions being incorrect.

8. I was advised that an Omeprazole suspension is not available; however, I have since obtained this. I believe I was lied to, or at worst misinformed, and the reason for this is that the suspension costs more than Losec Mups.

9. On 17 August 2009, Dr. Anderson agreed Matthew should take vitamin drops; however, these were not prescribed on this date, despite our Health Visitor being led to believe that they were.

10. Your receptionist advised me that Matthew would probably not need vitamin drops because only premature babies require these. She was not placed to provide medical advice in this matter. This is incorrect and not in line with Infant Feeding Guidelines.

11. I was advised to obtain vitamin drops through the Minor Ailments service; however, they cannot be obtained in this manner.

12. A prescription for vitamin drops was not written until our Health Visitor challenged the GP on our behalf, whilst these are routinely prescribed for other children. This demonstrates an inconsistent standard of care.

13. The reason given for the failure to prescribe vitamin drops was that the GP did not know these were recommended, however this had been previously noted on Matthew’s file. I believe this proves that I have been lied to and that the real reason is an attempt to cut prescription costs.

14. On 21 December 2009 my prescription was offered to my mother when she asked for Matthew’s, meaning that the outcome of my lab tests was made available to her, rather than to me. This is a breach of my confidentiality and of the Data Protection Act 1998. Your Practice Information Leaflet states, with reference to Practice Rights and Responsibilities:

“Your confidentiality will be respected at all times.

Please do not ask us to give your result to a third person”

It also states, with reference to Data Protection:

“We comply with the Data Protection Act 1998 and other sources of guidance on privacy and data confidentiality and we take this duty very seriously. No personal information will be shared with a third party outside the NHS unless we have your written consent and agreement.”

15. On 21 December 2009, I was prescribed medication that is not safe for breastfeeding mothers, despite my telling the GP specifically that I was breastfeeding and knew that some treatments were unsuitable. Your Practice Information Leaflet states, with reference to Practice Rights and Responsibilities:

“We will explain the likely effects and side effects of any drug”

16. On 29 December 2009, a receptionist at the surgery advised me that few women breastfeed. This is a subjective remark and I believe it was likely based on her beliefs and experience, rather than on any data or fact.

17. On 29 December 2009, I was required to supply information to your receptionist, as I did not have the opportunity to speak to a GP. I feel that arrangements should have been made for a GP to call me back to remedy the previous error as I was told I was unable to book an appointment. I did not have an opportunity to discuss my concerns with a doctor, or ask what the risks would be to my son of each treatment available. Your Practice Information Leaflet states, with reference to the Practice Charter:

“You can find out test results when available from reception. The Doctor will see you if anything need[s] explaining.”

18. On 29 December 2009 your receptionist told me that my nail infection would not go away without treatment and whilst this may be the case I do not believe her statement was made as a result of any medical knowledge, nor was it her place to tell me this as she is not a doctor.

19. On 29 December 2009, your receptionist asked if I would consider stopping breastfeeding. I feel this is highly inappropriate as it is generally accepted that this would pose a risk to my baby, who should receive breast milk as part of a healthy diet, ideally, until at least the age of two years.

20. On 29 December 2009, your receptionist advised me that she would call me back, but failed to do so. I believe she did not intend to do so, as she asked me to call back myself at 5pm if she had not called me first.

21. On 29 December 2009, Dr. Anderson prescribed Tioconazole as an alternative treatment without first discussing this with me. The patient information leaflet states that breastfeeding mothers should only use this medication after first discussing the matter with a doctor or pharmacist.

I have included any dates that are known to me. Should you require any further information in respect of the above, I can be contacted in writing or by email at *******@*****.com.

Sincerely,

Mrs. Marion McDonald.

Yum yum!

Matthew is enjoying a tuna fish sandwich from O'Briens in Glasgow for his lunch. He's been very sick today so far so we hope this is heavy enough to stay down :-( He was weighed yesterday and was 5 ounces heavier than a fortnight ago so that's good.

Tomorrow - it's only a day away

It's been a pretty rubbish day today. Nothing bad happened but for some reason we've all just had a really bad one. Nobody knows why but everybody is counting the minutes until it's over.

Tomorrow, the Health Visitor is coming to weigh Matthew again. He's had some pretty good days since the last time, but some pretty rubbish days as well. Having said that, since Monday he's been eating like a horse, so we all hope he's climbed a centile or two. Fingers crossed.

Mummy won't be there for the Health Visitor because she's going to have a typing test. She's not going back to her old job so she needs to find a new one, and this is part of it. She's hoping it goes well because the job she's testing for is a really good one. The interview itself is on Tuesday. Gran's going to look after Matthew and see the Health Visitor instead of Mummy.

The annoying, nasal ginger-haired little girl was right though. Tomorrow - it's only a day away.

MILK!!!

Matthew signed "milk" this evening after his dinner. Well done Matthew! He's signed "more" a couple of times again today too, and he also waved "bye-bye" at bedtime when he went upstairs. He's getting there now.
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Health visitor called back again today. Matthew's consultant has decided he should have the barium swallow but won't refer him to Yorkhill, or go in early to let him have a morning appoinment. This means we're not giving consent for it. If it's that important, they can explain exactly why when we go back for a followup appointment at the end of the month. In fact, if it's that important, they would have made sure we did it by helping us. Never mind. He seemed much better today so that's something.

Sign of things to come

Matthew did his first sign today! This wasn't a picture of it, obviously. He signed, "more" three times at dinner to let us know he was still hungry. We think he might have signed "milk" earlier as well and waved but we weren't convinced at the time. Tonight's was definite though and in context so well done Matthew!
***
Mummy found out last night that the standard way to give a baby barium is to "just mix some in his bottle." Wonderful. And if he's breastfed and doesn't get a bottle? Nobody asked Mummy to bring expressed milk so she can only assume they intended to give Matthew formula for the first time since he was born. Not a chance. If he gets an appointment at a time that suits it's just as well that we found that out or we'd have had to leave anyway after we arrived because we've got by without feeding him formula so far and there's no way he's starting now. They - supposedly - promote breastfeeding and then assume nobody does it. It drives Mummy mental.

Health visitor came this afternoon and Matthew has gained 5 ounces this week. Thank goodness for that! She agreed that 6 hours is very excessive for fasting a baby, so she is going to phone his consultant at the RAH to see if they'll refer him to another, more child-friendly, hospital such as Yorkhill, who are more likely to be able to give us a morning appointment so that at least he is only one milk feed and breakfast. She's earning her pay this month!
***
Mummy has an interview at work next week on Thursday and after last week's trip being a bit tricky, Matthew is now coming too. That means Gran's coming as well to watch him for the one hour that Mummy won't be there. And this is easier how?!
ROAD TRIP!

Never mind

Matthew's not going for a barium swallow on Friday. Or at all. Mummy called radiology back this morning and she was very, very polite, but despite three different people giving different answers, the best she could get was that Matthew would need to be starved for 6, no 4, no 6 again, hours before his appointment and 2pm is the earliest they have.

This is BECAUSE he is a baby - not in spite of it. If he was an adult he could have a morning appointment, but a paediatrician has to be there and they only do the afternoon shift. Apparently all children are made to wait hungry during the day while their adult counterparts are attended to after sleeping through their fasting period.

Presumably it's easier to leave the kids upset because they're too young to complain to the hospital staff and their parents are left to manage them.

Mummy feels awful and very selfish for cancelling the appointment, but Matthew is only 7 months old, has only recently started weaning and is still getting most of his intake from breastmilk. When she's around he wants fed every 2 hours. He feeds little and often, on demand, and we think he does this because it helps him to keep the feed down. Mummy can't let him cry for 6 hours. He was only getting this test because of the doctor messing up in the first place anyway. We know what's wrong with him and no amount of tests will change it.
***
On the flip-side, his other bottom tooth has broken through gum now as well. Two for one!

URGENT: Please sign our petition for Matthew and others like him

Mummy's had enough. She's found an infant reflux website and she's let rip. The really sad thing is that other people have had it just as bad or worse.
***
PLEASE CLICK HERE TO SIGN AN OFFICIAL PETITION TO HELP MATTHEW GET LIQUID MEDICATION THAT WILL STOP HIM FROM SCREAMING IN PAIN. IT'S NOT HIS FAULT HE LIVES IN GREATER GLASGOW.
***

It just gets better

Yes, according to the hospital, Matthew is to have nothing to eat or drink for 6 hours before his 2pm appointment on Friday. That means from 8am. He normally wakes at 8.30am, so effectively we've to starve him from bedtime the night before. Or maybe we should just keep him awake all night and try to get him to sleep during the day? If they don't move the appointment to 9am it's getting cancelled. It's not worth putting him through that. Or me.

Moving on

To update on the healthcare disaster over the last couple of weeks, leading Mummy to write a Complaint letter to local GP, which didn't get sent as it turned out, we had a visit from the health visitor yesterday. The poor woman had to listen to the whole sad story, and in fairness I think she realised how upset we were getting. She had a look at the pill-cutter that we had to use and said herself that it seemed difficult. She went back to the surgery to speak to a GP, then called me back.

Matthew now has a prescription for his Omeprazole as one tablet a day so that we can dose it safely, and for his Domperidone that we already had. She's also now managed to get the prescription for his vitamin drops. We didn't blog that fiasco but basically nobody wants to pay for Matthew's vitamin drops and so the GP and chemist kept bouncing us back and forward, and in the end we paid for them ourselves to make sure he got them. It's the same problem as with his Omeprazole tablets really, in that it's all about money. She also got the script written for 2 months supply and put on repeat so that we only have to collect it every couple of months. This is a big help.

BUT...

She checked and Omeprazole isn't available as a liquid. This is despite us finding over 20 references to it on UK websites such as this one. They all seem to agree that the reason for it "not existing" when you ask is that it costs the NHS 5 times as much as the tablets. Frankly, we don't care.

Firstly, it is for a baby and both Mummy and Daddy pay their contributions. They have done since they started working at 16 years of age and neither of them ever visit the doctor themelves, so we would say they deserve some of that back in the form of necessary medication for their infant son, who is suffering.

Secondly, and we feel strongly about this one, under no circumstances is it acceptable for a health professional to lie to us. That is NEVER ok and we are thoroughly disgusted. They've ignored us when we said he was ill, resulting in his being hospitalised all those months ago. They've fobbed us off when we asked them to check his medication, twice, resulting in his being undermedicated and therefore causing his weight gain to stall again. As a result of this, he is now going for a barium meal next week, which no doubt will be stressful for the whole family. We then had difficulty even getting a reasonable prescription dosed for him. Then to boot, WE ARE LIED TO???!!! It gets better...

When Mummy asked last about the prescription for vitamin drops, the receptionist read from Matthew's file: "These are not routinely prescribed. They can be obtained through Minor Ailments at the pharmacy. Infant Feeding Guidelines recommend vitamin supplements for breastfed babies." However, she was told by the Health Visitor that the GP had not prescribed them because he "didn't know the Infant Feeding Guidelines recommended vitamin supplements." Shouldn't a GP know that? And, oh yes, HE WROTE IT ON THE DAMN FILE A MONTH AGO!!! LIAR LIAR PANTS ON FIRE!!!

Anyway he was weighed and he seems to have lost 50 grams, and that was with the nappy on this time. HV says not to worry because it might be because of the hospital scales used for the last reading, but then that would be just as bad because then he hadn't gained last time either. She's coming back on Thursday again.

It's a good thing that Mummy isn't back at work any time soon because she'd need:
- 1 day off a week to sit in for the Health Visitor
- 1 day off a month to go to the hospital
- 1 day off a week to argue with the GP
- 1 day off a month (2 months now, to be fair) to argue with the pharmacist
and therefore probably couldn't hold down any job, let alone the one she was doing!

Why is everything so hard?!
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On a plus side, his first tooth is finally starting to make an appearance and he has a little jaggy bit now. No more cake!!!