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.