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Carer experience

Posted By wisernow

"Carer experience"

About: Leeds and York Partnership NHS Foundation Trust / Eating disorders

(as a carer),

Yorkshire Centre for Eating Disorders.

It's now two years since our daughter was treated at the YCED.   Since her discharge from the ward, she has made good progress overall but with relapses.  

We are grateful to the service for the input she received to help her own recovery and she was supported by some very genuine and dedicated members of staff.  The only contact that we as carers had with the ward staff was confusing and distressing but our daughter seemed to be doing well, so we went along with it because we did not want to jeopardise her recovery.  

Now that we are stronger and with knowledge of other carers' experience in other places, we realise that the contact we had was unusual. More importantly we are very wary, as is our daughter, of being part of her ongoing treatment, despite the fact that we have been her main carers since discharge and despite new professionals encouraging it.  

I sincerely hope that the approach has changed.  

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Responses

Response from Linda Rose, Head of Nursing and Patient Experience, Nursing Professions and Quality, Leeds and York Partnership NHS Trust 6 years ago
Linda Rose
Head of Nursing and Patient Experience, Nursing Professions and Quality,
Leeds and York Partnership NHS Trust

Submitted on 20/04/2018 at 13:26
Published on Care Opinion at 15:58

picture of Linda Rose

Dear wisernow,

Thank you for your feedback which is really helpful, and important to us.

I am pleased to hear that your daughter benefitted from the treatment on Ward 6 YCED, and that it was a good patient experience.

However, I was disappointed to hear that your experience was less so.

As a service we always try to involve carers in their family members treatment, as much as the individual is willing to allow this, and have given their consent.

Carers are encouraged to attend the initial visits and are given a welcome booklet. Once in treatment, carers can attend the care programme meetings and four weekly review meetings to support their family member; as a helpful way of gaining an understanding of what the treatment is, and how it is delivered. We also provide family meetings and have recently recruited a family therapist to the team, alongside our other therapies.

Over the last couple of years we have made what we hope are positive changes to support carers. This includes an educational package delivered as a workshop which is facilitated by our staff.

The monthly carers support group is well established and well attended and again, this is facilitated by our staff.

At the end of treatment we ask patients as well as carers to complete their own satisfaction questionnaire. Feedback received is raised within our clinical governance meetings, where actions are assigned to our staff with the expectation that feedback is responded to. The governance meetings are attended by carers who have offered their help to support the service make real improvements and have input into service development plans taking a particular look from the carers perspective.

I hope my response has given you some further insight into improvements we've made and our ongoing commitment to ensure that patients and carers are involved in all that we do.

If you would like to discuss your experiences further please do not hesitate to contact the YCED and ask to speak with the Ward Manager.

With kind regards

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Update posted by wisernow (a carer)

Thank you for your reply explaining the contact carers can have with the unit, some of which are improvements since our daughter was an inpatient.

I appreciate that carer involvement depends on consent from the patient. I also appreciate that it can be important for the patient to take ownership of his/her own recovery. In these situations I believe that extra care needs to be paid to the content and tone of the contact carers do have with the staff. In our case the contact was reduced to family meetings. Knowing what we know now, we would have made sure we knew what to expect from the meetings. I am interested that you mention family meetings in the same sentence as a family therapist. The family meetings we had were not family therapy, which I would expect to take into account the perspectives of each family member. Rather than this, the family meetings were led by a member of staff who supported our daughter to voice her complaints against us. It was not clear whether the complaints were historical or referring to the time after her eating disorder had developed. It was also not clear whether the nature of the complaints was being seen as contributing to the development of the eating disorder. The tone of the meetings was combative. When I asked if recognition could be given to what we were doing right, I was told that it would stop us from hearing the message. A simple ‘I need more of this and less of that’ would have sufficed. We had educated ourselves about eating disorders and carer behaviour and attended carer support groups but we were still vulnerable. Also, we expected to be asked, perhaps privately, for information about our daughter’s development and her behaviour before she had the eating disorder, but it was not sought.

I recommend that other carers in a similar situation make sure they know what to expect from a family meeting and trust their instincts if it doesn’t feel right.

Response from Linda Rose, Head of Nursing and Patient Experience, Nursing Professions and Quality, Leeds and York Partnership NHS Trust 5 years ago
We have made a change
Linda Rose
Head of Nursing and Patient Experience, Nursing Professions and Quality,
Leeds and York Partnership NHS Trust

Submitted on 29/05/2018 at 14:53
Published on Care Opinion at 16:52

picture of Linda Rose

Dear wisernow

Once again thank you very much for taking the time to give your feedback and share your experiences. It really does help managers look at areas for improvement, and I have fed your comments back directly to the senior management team.

The service has received some positive feedback from families about their experiences of family meetings and we will continue to offer family meetings as a separate intervention to family therapy. As you point out- the two are very different.

An improvement we have made regarding the management of family meetings is to support staff confidence and competency levels to ensure that they are equipped to meet the needs of those attending the meetings and to ensure that where any professional learning/ training needs are identified, the correct support is put in place.

We have been able to recruit a family therapist to our team recently and have just designed a patient and carer leaflet to explain the difference between the 2 interventions; how they can be accessed, and an important point as you have raised, makes it clear what to expect.

I certainly do agree that if patients, carers, families or staff are engaged in something that does not feel right or is uncomfortable, that the intervention should be paused /ended and reflected upon to improve understanding and a way forward to work better.

We are committed to improving our services for patients and their families and I hope my response provides further reassurance of our integrity.

With kind regards

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