Sorry - very long post but lots to say on this subject and hope it will lead to some changes and help make a difference for others in the future!
This post is about pregnancy loss under the care of Sevenoaks and Pembury but in turn also about mental health service provision in the area as it actually goes hand in hand.
July 2011 ? Sevenoaks. Two visits to my GP and 2 telephone consults with same GP with text book symptoms of an ectopic pregnancy. GP knew we were trying to conceive and never did a pregnancy test. Told me there was nothing wrong and I must be having a bad period (coincidentally bleeding had started on the exact day my period was due) even though I insisted that this was very abnormal for me at that my periods are so regular and predictable I can set a watch by them.
Finally one weekend I was in such agony that DH said I really needed help and he wanted to take me to hospital. I said no at first as thought from the GPs visits that I was being a wimp about an unusually bad period. Compromised with DH and called NHS Direct. They told me to talk a pregnancy test and made an appoint with out of hours doc at Sevenoaks Hospital. Pregnancy test came up positive. Out of hours GP very sweet. He called Pembury EPDU but there was nothing they could do as it was the weekend and there are no sonographers! Made an appointment for Monday morning.
Scan ? showed empty womb ? so classed as PUL ? pregnancy of unknown location. Another positive pregnancy test. Blood test taken to measure HCG levels. Wednesday second lot of scans and bloods. Called by hospital 10:40pm that eve and asked to come in for more scans next day and to review my case.
Finally ectopic pregnancy found in my RH fallopian tube ? apparently it had been previously missed because it has looked like my ovary (8 weeks pregnant by LMP) ! Told could not leave under any circumstances and had to have emergency surgery to remove ectopic pregnancy as they said I was on the brink of rupturing and they would have to see where they could squeeze me in on the surgery list. Waited in room for hours on my own with different doctors, anaesthetists etc popping in and out fitting cannulas etc. And because having surgery - no food so started to get very weak. Very cold with aircon and also not clean ? I was in the same consult room each day and same wrappers had been on the floor and marks on the desk on each of my visits that week!
However, the staff in the EPDU/Emergency Gynae are superb people, particularly the nurses and registrars. Had tube partially removed and blocked up under laparoscopic surgery. Kept in overnight in a fantastic private room. I think I was too fragile to be on a ward. Television didn?t work but TBO I really didn?t care ? would have bothered some people if staying in longer. Food very limited for me as I?m non-lactose but this isn?t really what this post is about so I won?t go into that.
On discharge no information was given about the gas in my abdomen and the level of pain I would experience when I got home, which was excruciating, frightening at first and lasted for about 10 days. I wasn?t told when to take plasters off. Given a leaflet about ectopic pregnancy and told not to get pregnant again until had had at least one compete menstral cycle. I was also asked if I wanted to be followed up by my GP or by a midwife ? given experience with GP ? I requested midwife. Never heard a peep from anyone, so we tried to make sense of it on our own. We were really shocked when we did our own reading up into ectopic pregnancies on to discover that I could have lost all my reproductive organs and worse still, I could have died had it not been caught in time.
September 2011 ? pregnant again. Because of previous ectopic referred to EPDU for early scan. Scan at 6/7 weeks ? told only 5 weeks by scan as yoke sac present but empty. Scanned at 8 1/2 weeks ? heart beat seen. Booking apt with Sevenoaks Midwife noted down as a vulnerable patient due to previous pregnancy and previous history of depression triggered by bereavement. Booked in for dating scan as almost 3-week discrepancy between scan date and date of LMP. Midwife told me to come and see her after the scan. 21 November 2011 ? 10 or 13 weeks pregnant - Went for dating scan at Sevenoaks Hospital and diagnosed with MMC.
Went to see midwife ? waited but no one answered the door, so telephoned and left a message to say what had happened. As advised by sonographer, went to Pembury EPDU to be seen by a doctor. Long wait but put in room on our own so didn?t have to sit in the waiting room. Doctor explained two options ? ERPC or ?wait and see?. ERPC could not be done for another 4-5 days as theatre list too busy. I opted to let nature take its course as had had my fill of hospitals, scans and being internally poked, prodded etc. When I did miscarry it was very painful and dramatic with contractions. Called the gynae ward and was told to call an ambulance if I needed to but to bear in mind they had no room on the gynae ward and I would have to sit in A&E and wait to be seen for pain relief. In the end managed to stick it out at home and the worst was over after 6 hours. No contact or follow up from midwife. Went back to EPDU two weeks later for scan to confirm all contents had successfully left. Spoke to senior midwife and explained about lack of aftercare support. As a result - Two weeks later - finally contact made by Sevenoaks midwife who apologised for breakdown in comms and said they were reviewing their processes.
Strangely at the EPDU at Pembury, you have to fill out paper forms each time you visit ? even if you have been there many times previously. Surely they can call up your notes on the system?
February 2012 ? Positive pregnant test! Terrified. Back on the rollercoaster of living fortnight to fortnight. Wait for 3 weeks until 6 weeks pregnant to have first scan to determine whether ectopic or not. Another scan at 8 weeks and heart beat and a bit more of embryo forming seen. All looking good. April 2012 - Booked in by the amazing sonographer for a reassurance scan at 10 ½ weeks. Went to see GP as at that stage suffering from stress and anxiety due situation, coupled with to problems at work and I was concerned that it might affect the success of the pregnancy and that I might become unwell (mentally) due to everything current and past history. Told to find a private councillor.
MC 2 days before scan. Went for scan as scheduled which confirmed womb as now empty. I was given a leaflet on MC. I agree with MarathonMama, that I did feel as if I was being processed. The doctors are very professional but you feel that empathy is thin on the ground. I asked for follow up support from midwives. Never heard from anyone.
Understandably devastated and unable to get head round all these losses. Frightened at the prospect of going through another loss so couldn?t bear to get pregnant straight away.
August 2012 ? pregnant again. Back on the rollercoaster. Pregnancy progressing and am now 24 weeks pregnant. Pschologically have been in a terrible state and unable to accept the pregnancy is progressing. Things have been so bad that if it wasn?t for DH being so amazing, I probably wouldn?t be here today. Finally got appointment to see a consultant at 18 weeks, at Pembury based on midwife referral at booking appt. You get sent a very enigmatic letter with an appointment date and time but are not told who you are seeing or what it might be for. When you call up to find out more, they can?t tell you anything and just say the appointment must have been triggered by something that arose from the booking appointment such as diabetes. You can?t change the appointment you?ve been given. The consultant only patients Fridays 10-3pm and is totally overbooked so if you can?t make the appointment they?ve given you the next available appointment is 2-3 months ahead.
I couldn?t make the appointment time I had been given and was instead was told to turn up at the start of the clinic and 10am would be seen asap. I waited 1 ½ hours before I broke down. I had gone on my own and sitting in the waiting room at the women?s clinic was so traumatic. It?s huge - about half the size of a football pitch and full of women so heavily pregnant they?re about to drop and toddlers having tantrums. Sitting there, surround by these people I became more and more distressed, still scared as to whether my pregnancy was going to be successful. Finally seen only when I asked at reception what was going and they could see I was clearly distressed. Was first seen by a nurse and despite my obvious distress, she wanted to send me back into the waiting room until I could be seen by a doctor. I asked to be able to wait somewhere else.
Seen by a doctor ? not the consultant I was booked to see. She spoke to me for a few minutes. Diagnosed severe depression and that she was referring me to MIMHS (Mother and Infant Mental Health Services) as very concerned that I was not connecting with my pregnancy and that I needed help. She told me I should get an appointment with my GP asap to get them to make the referral too, so that it would help push my case forward. Saw GP that afternoon.
December 2012 ? appointment to be assessed by mental health team at St John?s Centre Sevenoaks ? this closed on 2 January 2013 ? a travesty. Reception staff incredibly rude ? apparently due to immanent closure but surely they should be professional enough to still be able to do their jobs? Assessed by an occupational mental health professional and social worker who were very nice. Concluded I definitely needed MIMHS referral to get some support to turn things around before the baby comes. They said I may need medication. I said I was reluctant as worried about long term damage to baby. She said that I would be seen by a MIMHS professional who would be able to discuss all the pros and cons with me in making that decision.
End of December 2012 - becoming very unwell and DH very concerned I am going downhill rapidly. DH booked me an emergency doctors appoint (not with my GP). Doctor I saw was very cold and uninterested in his manner but said he would look into my referral and call me the next morning. Next morning he calls to say MIMHS has said to put me on medication and that I would be called that afternoon by someone from Highland House in Tunbridge Wells. I explained that although I now felt so unwell I would be open to considering medication, I would need to speak to someone about the pros and cons to make an informed decision.
End of the same day ? still not heard from Highland House so I call them. Social worker looks up my notes and says that my referral to MIMHS has been rejected and the occupational mental health professional I saw at St John?s will need to ?negotiate? with MIMHS to try and get some care for me. The GP I had spoken to that morning had also called them told them I had refused medication!!!!!!! When I explained that that wasn?t true she said that surely the GP, as a prescribing practitioner, should/could have at least talked me through things. Apparently until anything else can be ?negotiated? primary care is recommended and the wait is a minimum of 20 weeks!
Interesting to read that this is what should really happen in pregnancy:
www.rcpsych.ac.uk/expertadvice/problems/mentalhealthinpregnancy.aspx
www.kmpt.nhs.uk/mimhs
On a positive note my midwife has finally come up with something that could be of great help. A support group based in Tunbridge Wells STEPS that clearly hardly anyone seems to know about.
The group was set up by a lady who lost her son and found SANDS (Stillbirth and Neonatal Death Society) a great support, but when she was pregnant again she felt uncomfortable attending meetings. She therefore had the idea of starting STEPS (Sharing Thoughts and Emotions in Pregnancy, after a loss) for parents who have lost babies at various stages of pregnancy or shortly after birth, and are expecting another baby. The group is very small and informal and where you can talk openly about worries and experiences, or just to sit and listen. The groups meets once a month and one of 3 midwives attend for part of the meeting. [email protected].
I have contacted Linda and I?m hoping to go along to their next meeting.
To date - still no news from MIMHS, Highland House or any primary care services.
In summary, I feel that even if you do try and seek help you are just left to rot.
Pembury Maternity Unit
When you have had bad experiences of pregnancy and in turn hospitals, you are understandably scared. Pembury no longer does hospital tours of the maternity unit ? apparently this is due to infection control. This is a real shame as particularly women who have experienced pregnancy loss could certainly benefit from a tour before they go to give birth so they can try and make positive preparations for their labour and birth experiences.