An alarming lack of diagnosis and treatment for postnatal depression has forced women to take matters into their own hands, writes Dani Garavelli
Lauren Knight has a vivid way of describing her experience of postnatal depression (PND). Normally, her life is like one of those Ikea storage units, with everything neatly tidied away in separate compartments, she says. But after the birth of her second son Matthew, now two, it was as if someone had come along and tipped everything out on to the floor.
“It felt like it was all a mess and I couldn’t make sense of anything. I felt powerless and worthless,” she says. Knight hadn’t suffered any symptoms when she had her first son, Freddie, in 2011, but around eight weeks after Matthew was born she started feeling anxious. “I kept worrying something would happen to one of the boys, or to my husband. If he was five minutes late home from work I was terrified he had been in a terrible car crash.”
She was exhausted, but couldn’t sleep at night. “Freddie was still a toddler then and getting us all dressed and out the door for his playgroup seemed like climbing Mount Everest.”
When Matthew was getting his 16-week immunisations, Knight’s health visitor asked her to fill in a PND questionnaire, known as the Edinburgh Postnatal Depression Scale, which monitors women’s mental states. “I think these are flawed because many mothers want to pretend there’s nothing wrong, so they lie, but I decided to tell the truth. When I handed it over, I burst into tears because I knew I was going to have a high score.”
Compared with many other women, Knight was lucky. Her health visitor and GP were helpful; she was given anti-depressants and referred for counselling. Even so, it was four to six weeks before the medication kicked in and four months before the counselling service run by CrossReach – formerly the Church of Scotland’s Board of Social Responsibility – could fit her in. “During that time I coped by dividing my day into small blocks of time,” she says. “I would focus on getting through the next two hours, until the boys were due their nap, or until my husband came home. If I thought about the whole day, I couldn’t cope.”
I felt I was just existing. I was physically there, but not emotionally there
Once Knight was well again, she helped to set up a voluntary organisation called Juno Perinatal Mental Health Support (Juno PMHS) which offers one-to-one befriending and group support to women in Edinburgh; it complements professional counselling, but it also provides a stopgap for women stuck on waiting lists. Since launching it in February, Knight has met lots of women whose health visitors and GPs have been less supportive and who have had trouble accessing services.
“There was one woman whose GP told her: ‘I had five children. I didn’t have time to get depressed, I just had to get on with it,’ and another who was suffering ante-natal depression and was told she’d have to wait eight months for treatment,” she says.
Campaigners have been trying to highlight the gaps in care for perinatal depression (the over-arching term for both ante and postnatal depression) for some time. Earlier this year, the NSPCC published a report which showed 71 per cent of health boards in Scotland do not have any midwives or health visitors with accredited training in perinatal mental health and only five out of 14 local health boards have a specialist community perinatal health service.
There are only two mother and baby in-patient units for women with PND and postpartum psychosis (a severe mental illness which can cause delusional thinking) with a total of 12 beds for the whole of Scotland.
Last week, the spotlight fell on the gaps in services again when a mother pleaded guilty to killing her ten-month-old baby after being refused treatment for PND. Erin Sutherland’s GP had contacted NHS Lothian’s perinatal mental health team to organise for her to see a community psychiatric nurse, but was told she was not eligible for support because Chloe was over six months old. This was despite the fact that Sutherland had a record of mental health problems and, after a previous pregnancy, had suffered so badly from postnatal depression, she had been admitted as an in-patient when her baby was eight months old.
The more accepted cut-off point for accessing support for postnatal depression is a year (as recommended by the Scottish Intercollegiate Guidelines Network) and most PND services will continue working with women until their children are two. NHS Lothian perinatal service first came under scrutiny several years ago when Dr Jane Hamilton – a consultant who specialises in perinatal psychiatry – raised concerns about the adequacy of specialist training and supervision for staff.
An external review carried out by the Scottish Public Services Ombudsman in 2011 into complaints about the treatment of one mother found she had been “unreasonably diagnosed” with a personality disorder, inappropriately discharged and that there had been a failure to prescribe any medication. After being turned away, the woman travelled to France to visit her mother, where she was successfully treated for postpartum psychosis. Lothians MSP Neil Findlay says sources close to the service still have serious concerns about its safety and effectiveness.
In the wake of last week’s court case, the Mental Health Welfare Commission has been asked to carry out an inquiry. But campaigners say the tragedy has highlighted the need for a greater focus on perinatal depression and for a more consistent and co-ordinated approach across the country.
“The most important thing is to address the fact there are no national standards for perinatal provision in Scotland,” says Susan Galloway, senior policy researcher for the NSPCC and author of the report. “We have called for a national clinical network for perinatal mental health, similar to what we have in other priority areas, which can provide national leadership, develop national standards and start to co-ordinate the development of services across the health boards.”
Galloway herself suffered postnatal depression 16 years ago; when she began her research, she was disappointed to find there had not been more progress, given how common the condition is.
Around 13 per cent of women (and up to 10 per cent of men) are said to suffer from PND, though some experts believe the figure is much higher – perhaps as many as one in four. One to two in 1,000 women will suffer postpartum psychosis.
Those with a history of mental illness – depression, bipolar disorder, schizophrenia or PND with another child – will be at increased risk, but PND can also affect those with no previous symptoms, particularly, but not exclusively, if they have suffered a traumatic birth or are experiencing a turbulent personal life event such as a relationship break-up. Severe postnatal depression can lead to lack of sleep, feelings of inadequacy, a failure to bond with a child and – occasionally – a desire to hurt yourself and/or your baby.
Cases like Sutherland’s are very rare, but studies show PND may be linked to behavioural and developmental problems in older children, which is another reason experts believe early detection and treatment should be a priority.
“One of the things that’s unique about this area of mental health is that you’re intervening to help two generations at once,” says Galloway. “If a woman is suffering from depression or a mental health disorder for a matter of months, that’s a short time in her lifespan, but it is an incredibly long time for a baby of less than a year, and it has a significant impact on them in terms of receiving the warm, responsive, consistent care they need.”
Despite this, perinatal mental health does not appear to have been prioritised nationally. Across the country, provision is patchy, and even where the condition is picked up promptly by front-line professionals, there are not always follow-up services for women to access.
The demand for more resources can be measured by the reaction to a Twitter support service started up by Rosey Wren, who suffered PND after giving birth to each of her three children. Wren, who lives in the Western Isles, had a history of depression, so alarm bells should have sounded when she became pregnant with her first baby at the age of 19, but there was no additional antenatal support and no-one noticed she was struggling to cope. She says her first year with her daughter Kimberley is a blur. “I felt I was just existing. I was going through the motions of everyday life. I was physically there, but not emotionally there,” she says.
Because her health visitor kept changing, she wasn’t able to establish a relationship with her and felt uncomfortable talking about how she felt. Eventually – when Kimberley was eight months old – Wren went to the doctor and was given antidepressants; she was also offered counselling, which she refused. The second time round, her PND didn’t start until her son Connor was almost a year old, and the third time she suffered antenatally was when her youngest, Harvey, was about to turn one.
Later, she discovered there had been a peer support network in the Western Isles when she was ill, but that no-one had ever told her about it. In December 2013, Wren started #pndhour and #pndchat on Twitter. In the 18 months that have followed, 2,500 people have taken part in #pndhour, with users seeing it as invaluable. “Breaks my heart, but mental healthcare on the NHS is underfunded, patchy, inconsistent and not fit for purpose. HOWEVER #pndhour,” one mother tweeted last week.
The NSPCC report found that, in nine of Scotland’s 14 health boards, service provision for perinatal health was through generic adult community mental health teams which were either nurse or psychologist-led. None of these services had dedicated clinical time from a psychiatrist and just three had dedicated clinical time from a mental health nurse. Half did not have clear Integrated Care Pathways in place for women at risk, and a quarter did not have established standards for referral and management.
“One of the startling things is that, until fairly recently, in midwifery and health visiting education, there has been almost no dedicated content on perinatal mental illness, despite how prevalent it is,” Galloway says.
Dr Mary Ross-Davie, education project manager for maternity health with NHS Education for Scotland, says undergraduate midwifery courses have now extended the amount of time spent on perinatal mental health, with the University of the West of Scotland devoting a whole module – around 40 hours of learning – to the issue. NHS Education for Scotland has also developed a new e-learning resource – with five hours of material – to allow qualified midwives to update their skills.
“If you don’t know much about conditions like bipolar disorder or schizophrenia or OCD, as a practitioner you will find it difficult to talk to women in a comfortable way about those conditions and that is a barrier to women talking freely about that element of their health,” Ross-Davie says. She believes every health board should have at least one specialist perinatal midwife.
As far as counselling is concerned, CrossReach – which Sutherland used for a short time – is highly regarded. It has two main centres – one in Edinburgh, which has a number of satellite services, and a smaller one in Glasgow. It works with more than 400 women a year, offering one-to-one counselling, group counselling, art therapy, family therapy and massage. However, there are some areas where there is no counselling at all.
Galloway says her research suggests health boards do want to take a more joined-up, consistent approach. “Our report shows 90 per cent want a national clinical network so the support is there. It’s about getting the government to back that up and make sure it happens,” she says.
That would be good news for the many voluntary services which are currently plugging the gap. Juno PMHS, for example, now has ten committee members and runs four groups across Edinburgh, but making that happen takes a lot of hard work and fund-raising. For Knight, though, it is worth the effort. “When I started this, the thing I said was that I never want anyone to feel how I felt when I had postnatal depression,” she says. “I don’t want anyone to feel they are suffering alone.” «