Since starting Mothers Uncovered, funding has always been one of our struggles. If you’ve not had to apply for grants, imagine it as a job application. A Groundhog Day of a job application because you always have to be looking to the next one, mostly to pay for what you are currently doing that you claimed for on a form last year. Confusing huh? When filling out these forms, you have to cram all your square pegs into round holes in order to be in with a chance of success. Each time you need to sound as if you’re doing something new and different, rather than the same thing that you know works, with a new set of service users. Funders are not known for wanting to pay core costs, merely project costs. Yet companies still need to have insurance, file accounts and pay for their web presence – who pays for these? The service users should pay, I hear you say. Yes, but as charities, we have a moral duty not to set fees for activities too high to exclude people. Indeed, most of the forms you see are exhorting groups to cater for deprived users.
If an organisation gets bigger, it has more chance of sustainability. I have become more vocal on the topic of maternal mental health in the last few years, not only because I believe in it, but to attempt to raise our profile to give us more security. I set up a petition some time back, which sits quietly on Change.org, not doing very much because the subject is not of great interest to the population at large and is not click-baity enough, despite my inclusion of the fact inadequate care is costing the country £8bn p.a. You can see it here https://www.change.org/p/public-health-england-nhs-mothers-need-more-support-help-them-now?just_created=true
Interestingly, I met Duncan Selbie (CEO, Public Health England), one of those petitioned, at an event in November who exhorted me to keep going – ‘we need you more than ever.’
An initiative was set up a year or so back called 1001 Critical Days, i.e. from conception until the baby turns two, because research had shown this is one of most significant times in a person’s life. The focus is still on the baby, rather than the mother, but hell, we’ll take it, if it means investment in the perinatal stage. It is, of course, an investment for everyone, not just because it creates a healthier, happier society, but because those children grow up and become tax-paying citizens.
About two years back I heard about potential funding for ‘prevention rather than cure’ coming from government. I have yet to see any sign of this. I have been to many, many meetings and consultations with the Clinical Commissioning Groups (CCGs) down here. There is always much talk of change and investment in the third sector. What then happens is that some of the promised money seems to get siphoned off, away from mental health. Then large and unwieldy contracts are put out to tender which are only eligible (or manageable) for the large providers. Smaller organisations don’t stand a chance. Then the process is repeated every few months with a new set of faces. The smaller organisations still don’t get a look in and many face collapse because of it.
The women that attend our Mothers Uncovered groups have often attended NHS run support groups carried out by health professionals, but what they really value is the peer support we offer. Several say we quite literally have saved their lives. Additionally, since we have published both a book and a couple of articles on the topic, I receive regular emails from women around the country, either asking if something like Mothers Uncovered exists in their area or can they create it, if not. We are looking to expand, but we don’t want to bulldozer Mothers Uncovered into an area when there is a group already operating. There are many small groups operating nationwide, geared to the needs of those communities, but they struggle to survive because they often can’t afford to publicise, and peer support normally gets lumped in with volunteering, therefore it is not valued or supported and is often not sustainable.
I can see why peer support creates a problem for those in charge – how can it be monitored, assessed, held accountable? But we know the NHS is creaking at the seams and something I think, needs to change. The NHS Perinatal team in Brighton, for example, is completely swamped and overworked and cannot see all the women that need help, unless they are deemed high risk. I often hear from mothers saying that they wished they’d heard about our services. In fact, I quite often hear from those in higher up positions that they have ‘never heard of us.’ It is said almost triumphantly, which is slightly galling and I’m not sure what purpose it serves. We do our best to put the word out – we have flyers, social media, Mailchimp. What we critically need is signposting from GPs, midwives and health visitors, which they are not currently allowed to do because they can only recommend NHS services.
I attended an event on maternal mental wellbeing in Parliament on Dec 10 last year. Yes, another of the ‘Days of Brexit’. It was chaired by a male obstetrician and sponsored by 3 male MPs, but luckily there were also some women on hand to discuss their experiences [eyeroll emoji]. I raised a point with Tim Loughton MP, and asked for his reassurance that smaller peer-led groups would in fact be championed. I’m not sure he entirely welcomed it (!), but it got a cheer from several of the women in the room 😉. He did say that the Brighton CCG had been somewhat obstructive in collaborating on initiatives, so perhaps we are just unlucky.
The biggest problem peer support groups have (and this is true across the board for all social care, not just maternity) is that while the route to mental health care remains through the NHS, nothing will change. The system is too large and unwieldy. I’m no medic, but from my observations (which are shared by many other groups working in the field of peer support), a considerable majority of people’s problems can be better managed by attending peer support groups and initiatives than by being referred (usually after a wait of several months) to a clinician who will provide the ‘expert’ treatment and possibly medication, but not the empathy and sense of community that is more useful long-term.
Peer support is also much cheaper. One of our Mothers Uncovered five week groups, for example, costs about £1000 to run and provides care for up to eight women and their babies. If any one of those women had not attended and spiralled into PND (and several past participants say attending is the DIRECT reason this has not happened), necessitating a hospital stay, the cost of her care, not to mention the emotional fallout for her family and friends, would be way in excess of that.
The CCGS are somewhat suspicious of peer support groups – the charitable reason you might ascribe is because they feel they are untested. Getting fed up of that attitude, and also knowing that we might stand more of a chance if we had an official report, about four years ago, Mothers Uncovered jointly commissioned a report into the effectiveness of peer support services. The report has been published in two academic journals, you can see links on our site http://www.mothersuncovered.com/sussex-peer-support-network-support.html . Here is the evidence, you would think, but still nothing changes, leading you to wonder if it is the wresting away of control from large providers they are more concerned about.
Following the report, I founded the Sussex Peer Support Network (SPSN) to represent some thirty organisations across Sussex. I had a meeting with Caroline Lucas, who wrote to Alistair Burt (then at the Dept of Health) about creating a pilot to prove the effectiveness of peer support groups. He batted it back to say she should contact the local CCG, which she duly did, then the matter was sidestepped and eventually fell apart. SPSN has pretty much fallen apart as well, as none of the groups have the spare time or money to manage it, and funding for it proved impossible to find. We are trying again with a different funding stream, so maybe this time we’ll strike lucky.
It seems that the best way to get action is to reach to the decision-makers, i.e. government. Sadly, the nightmare that is Brexit means that none of them have much time and who knows will even be in office in a few months anyway! At the event I mentioned earlier, the excellent Luciana Berger spoke about exactly all of the things I have mentioned. Obviously, she’s had a spot of personal bother herself recently and is shortly off on maternity leave anyway. I am hoping to have a meeting with Jess Philips at some point in the next few months. What is needed is a cross-party group of MPs who could push for the introduction of a peer support national database of services. I’d like for it to be for all services, but because I only have a certain number of hours, I’ll concentrate on maternal mental health. I’ll also be in two magazines banging this particular drum – Sussex Life in April and a new magazine being launched at the end of March by Anna Ceesay, who I met at another event.
I will keep on trucking. Women’s lives depend on it…..
I've been reading one of Alan Bennett's diaries (very slowly. Not because I don't enjoy it, but because it's in the bathroom, reserved for my post-shower sit in towel to dry off). It made me realise I would LOVE my own 'What I've been up to this week!' type column in a paper/magazine. So would many thousands of others, I'd imagine. So, I've created my own additional section here. Less ranty, reflectiony or reviewy than the other bits.