Good evening everybody.
This evenings piece, ready for you is by someone in POTATO who has become quite an expert in mental health services. Not that they set out to do this.
Well, few of the the things we set out thinking we would be doing as adoptive parents are actually the things we’ve ended up doing!
Most of the POTATO members have come across CAMHS (Child and Adolescent Mental Health Services) at some point. They have had mixed experiences from the hugely supportive but with no resources to offer, to not at all supportive and very vague, to pondering about what could be provided for the level of need presented in children and teens with extensive trauma related mental health needs.
For those who have extensive, complex, epigentic linked and to a degree organic serious mental health needs, an inpatient stay of several months might be required.
These are as rare as hens teeth.
We are encouraged to see all main political parties and campaigning groups have signed up to improving CAMHS and “ending out of area placements” but sometimes it's really hard to see action making any difference.
This article was written recently, in the last year in fact, but it STILL just as relevant as in 2017. It's a challenge to spot any differences at all.
The impact of the mental health bed crisis!
When our children were placed with us aged 3 (twins) and 18 months, we had a lot of information about their history of severe neglect due to parents drug and alcohol issues. At that time there was a big focus on attachment and little was known about the impact that such trauma can have on brain development. So, we were told that because they had remained with their older sister (not being adopted) in foster care and had made good attachments there shouldn’t be any problems. Furthermore, there was no evidence of any problems – they were just “naughty” but the FC had provided good care and there were now “no problems”.
Indeed – there seemed not to be anything to be concerned about. Apart from silent crying, over compliance and “hyperactivity”, that is. In any case, after placement they settled down and eventually presented as typical children. And our experience was, actually, that they were “typical” children – if sometimes a little more “hyper” than others.
This all changed for us when our twin girls began to present with mental health problems which eventually resulted in both of them being admitted to inpatient units aged 14.
Now, we all know that the NHS is marvellous! If you have a serious, life-threatening problem, you will almost certainly get the treatment you need at the appropriate time and usually fairly close to home. Not so, if you have a mental health condition. CAMHS is “not fit for purpose” in a lot of areas. The shortage of suitable NHS mental health beds has been highlighted by the media for quite a while now. Lots of professionals make the right “noises” about the issues, but I am not sure how many of them realise the impact that the bed shortage has on both the patient and their families.
Eloise, was placed in an adolescent mental health unit over an hour away from home. She couldn’t go to a local, open, unit as her sister was there, so she was sent to a secure unit two counties away. This was a totally inappropriate admission: she was suffering with anxiety and depression and did not need to be on a secure unit.
Restricted visiting hours meant that, because we had to use a major, usually congested, motorway to get there, we couldn’t see her in the week – meaning she only had visitors at the weekend. She has a younger brother who was too young to be left alone all day so he had to come and visit with us. Meaning he missed out on typical weekend activities with his friends.
On occasions, we would turn up to visit her and she would be too unwell to see us for more than 15 minutes. Or her visit would have been cancelled and staff not bothered to call us. When she was allowed local leave from the ward, we had to try and find activities to do (usually restaurants) to “entertain” her.
But, a more serious consequence of this placement was the impact on her wellbeing. It is acknowledged by those working in mental health that patients will copy the behaviours of others they are placed with.
Unsurprisingly, once in this unit her mental health deteriorated rapidly with an increase in the severity and frequency of her self-harming and she eventually became violent and was diagnosed with emerging personality disorder. Clinicians decided that she had to be kept in seclusion for an extended period. She was nursed in a room without even a bed – just a mattress on the floor. With nothing to do all day. Supervised constantly by two staff. A decision was made that she needed a bed in a forensic unit. BUT there were no beds available. She had to wait 6 weeks.
She was eventually offered a bed on a forensic unit 2 hours away from home. This hospital was a good placement for her. However, our Saturdays were now all about driving around the country doing visits.
It is not just the inconvenience (or the cost) to the family that is the issue - being placed at such a distance has an impact on her treatment and recovery. The hospital felt she would benefit from family therapy – very difficult to do when both parents work and we have to travel so far for each session. As they recover, patients begin to have leave home to spend time with their family and friends. Hospitals find it difficult to facilitate these visits when they involve a four hour round trip (first visits are usually with staff If a home visit takes place on a weekday (and these are supposed to build up to weekly visits) then we, her parents, needed to take time off work and her siblings missed her because they were at school. However, weekend home leave is very problematic as there are fewer staff on shift. Discharge to home involves a gradual transition over time and this is very hard to do with great distances.
Another impact was that it was difficult for us to build a relationship with staff working with her as we couldn’t attend the weekly ward rounds. So, it became hard to ensure she was being well cared for. Her “home” clinical team were often unable to attend meetings about her as it meant being out of the office the whole day. So she quickly got forgotten about.
When she was well enough to be “stepped down” to a less secure placement it became apparent that she “fell between services”. She wasn’t ready to come home as she had become institutionalised. A low secure ward was felt to be inappropriate because it was likely to be too “unsettled” and might unduly influence her – leading to a remission. However, open, acute, units wouldn’t take her as it was considered to be too big a step down. She was caught between provisions: there was literally no hospital suitable for her.
So she had to be moved to a community placement which didn’t work out. And she ended up in a serious of adolescent psychiatric Intensive Care Units (PICU) several hours away (the furthest was a distance of 4 hours)! However, she was approaching 18 and Adult services did not support out of county placements. Yippee! She’ll be moved closer to home, we thought. But it was not to be. Once again she “fell between services”. PICUs said she did not need their services, she wasn’t unwell enough but the acute team said she was too risky to have on their wards!
She is currently 1 ½ away on a PICU waiting for a treatment ward to admit her.
What has become clear to us as we struggle to get the right care for our daughter is that the shortage of suitable mental health beds is very real.
There needs to be more emphasis placed on getting patients close to home – to reduce cost/impact on the family, to aid the patient’s recovery and to reduce costs for the Trusts treating them.
We have had to fight to get her moved from wards where she was badly treated or inappropriately placed. We have been able to do this because we are not in awe of professionals (having dealt with them for so long as a result of adoption) and because we are articulate and informed.
It makes us wonder how many people with mental health problems who do not have a voice are left in unsuitable placements
POTATO Blog 2017
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