"Anorexia Nervosa/CAMHS /Nottingham/ InpatientCare/NHSEngland"

About: Nottinghamshire Healthcare NHS Foundation Trust / Child and Adolescent Mental Health Services – Inpatient

(as a parent/guardian),

We have recently again been facing the nightmare situation of finding the right inpatient treatment for my daughter.

Back in December our daughter began to deteriorate very quickly with a reccurrence of her eating disorder. Our CAMHS team very quickly realised the seriousness of this and decided she needed inpatient treatment. A referral was made late December and it was agreed by all involved in her care, that a specialist eating disorder unit would be the best place for her. You can imagine our devastation then when told, yet again, that no beds were available. Our daughter then began to reduce her food intake even further. Part of this was an attempt, in her words, to make herself 'more sick' and therefore a 'higher priority' for a bed. She continued to lose weight and after a regular GP check up was admitted to the Queens Medical Centre with a falling BP and tachycardia.

She remained there on a mixed paediatric ward for the next four weeks while the search for a bed continued. While the staff there generally took good care of our daughter, sadly they did not have the training and skills needed to offer the specialised treatment she needed. Therefore from the day of admission our daughter totally stopped eating, lost a further 2kg and was eventually put on nasal gastric feeds.

During the second week of admission a possibility of a bed was raised. Unfortunately not only was the date for this vague but also it was over 100 miles away. After much discussion we realised that we had no choice but to accept the offer and wait another agonising 2 weeks for the bed to become available.

We did however remain very concerned about this unit, not only due to the distance from home but also because no-one from the hospital or CAMHS team appeared to have any previous experience of the unit and therefore whether the ethos and way it was run would be appropriate for our daughter's complex needs.

She was admitted in early February, and although we were disappointed not to meet the consultant who would be in charge of her care, the other staff appeared kind and caring and confident they could offer the treatment our daughter so desperately needed.

It was however an extremely traumatic experience for all of us not least our daughter. Not only were we leaving her in the care of people we had never met before but we also had the added trauma of being 100 miles away from her.

Our daughter was an inpatient at this unit for almost 1 month but sadly has made no progress in terms of eating or psychological work. We believe, along with our CAMHS team, that this lack of progress or a coherent plan for progression, is due to the way the unit operates. It has what appears to be an extremely laid back and 'collaborative' style approach. There is for instance no expectation that patients must sit at the table during mealtimes. In addition the meals are not prepared on site using fresh ingredients but sent in from another part of the hospital to be re-heated. The meals look extremely plain and unappetising which is completely unacceptable in any hospital, never mind an eating disorder unit! Also concerning is the freedom around Internet and use of mobile phones. Patients frequently post comments and photographs on their Instagram accounts. This has horrified us especially as it is well known that use of social media can be extremely unhelpful and even dangerous to vulnerable girls who suffer from eating disorders.

We also discovered last week that our daughter was in possession of a full pot of paracetamol (this was also posted on Instagram). How she got hold of this we have no idea. We can only assume she ordered it online and had it delivered there or else took it with her when she was admitted. In either case we would have expected that her post/belongings would have been examined.

Above all we feel that the team at this unit do not have the confidence, understanding and skills to move our daughter forward. She also is of the same opinion, although understandably equally terrified of what the alternative may be.

It was clear that a bed had to be found for her and straight away. It was proving to be a massive struggle for us not only to manage her nasal gastric feeds but to cope with her fragile mental state and thus keep her safe. As it is a weekend we don't have access to our CAMHS team nor the crisis team. The only emergency support we have is via the A&E department.

Unfortunately our last conversation with CAMHS was with the manager of the eating disorder team on our return home. Her completely unsympathetic and cold manner did nothing to reassure us that a solution could be found or even should be found. We were informed that we would be offered no support over the weekend other than the A&E department.

We were in a desperate needing someone to find our daughter a suitable and safe bed in an inpatient unit. Our first choice continued to be the unit where she originally received inpatient care. If it is the case that there are no NHS beds available then we would expect NHS England to provide the necessary funding to secure a private bed. Failing that, we were thinking that there was no alternative but to proceed with a crowdfunding plea and or media campaign to raise the necessary funds. This is undoubtedly something that would be keen to avoid, we would not want the publicity that it would entail. At the end of the day however, our daughter's need for immediate, safe and appropriate care has to be the main priority.

Our daughter does now have an inpatient bed in our local unit. Unfortunately it isn't a specialist eating disorder unit and this is why our experienced consultant has not agreed to a previous admission here. We remain hopeful, that with close involvement from ourselves and her dedicated out patient CAMHS team, our daughter's condition will improve and she will at last begin the long journey to recovery


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Response from Michelle Handsaker, Integrated Service Manager, Specialist Services Directorate, Nottinghamshire Healthcare NHS Trust

Dear HelpingHoping,

Thank you for taking the time to share your posting as this has clearly been a distressing time for you and your family. I note most of the concerns raised relate to your daughters experiences whilst being cared for in services outside of Nottinghamshire CAMHS and with NHSE funding and accessing specialist eating disorder services. Unfortunatley I am unable to comment on these specific issues however it is my understanding that these are being investigated as part of a formal complaints process. We will look into the elements you have raised which relate specifically to the Nottinghamshire CAMHS Service and I understand that professional support is being offered. I am pleased to note that although not a placement within a specialist eating disorders unit your daughter is receiving treatment locally. It sounds as if there is good support from the outpatient team and you are hopeful that your daughter's condition will improve. Once again thank you for sharing your concerns and I wish your daughter a good recovery.

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