‘Waiting for her to die’

Perceptions of a terminally ill woman who was denied an integrated assessment and services

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The Public Services Ombudsman for Wales (PSOW) has published a troubling report[1] concerning a systems failure by a Welsh Council.  The complainant (Mrs X) was discharged from hospital: she was terminally ill with a diagnosis of advanced heart failure.  She contacted her council by telephone and asked to be assessed for a package of social care support: for a few mornings a week including showering.  She was told that the Council did not provide this service and sent a list of private care providers.  She continued to say how unwell she felt and was advised to see her GP.  The referral was closed with no further action to be taken by the Council

With support she contacted a number of private providers but was unable to afford their services.  Two weeks later her advocate contacted the council and it recorded that she was terminally ill (end stage heart failure with 10% function of her heart) and needed 45 minutes of support with morning personal care tasks and food preparation.  She was referred to the council’s reablement unit for an assessment but this service had no spare capacity and so none was undertaken.  A month later the council offered to refer her to domiciliary care – but by this time her family were supporting her and she was very ill.

A formal complaint was made by the advocate, concerning the failure to assess, the failure to provide support, the failure give proper consideration to her personal circumstances, and in due course the council’s failure to handle the complaints process (from complaint to final report took six months).

All complaints were upheld. The ombudsman’s officer’s report notes that the complainant (para 64):

was left feeling that the Council was waiting for her to die so that it did not have to address her complaint. It is also perhaps the clearest indication that the Council did not take into account Mrs X’s personal circumstances, particularly her terminal diagnosis. 

 

The PSOW held that the complaint engaged Article 8 of the European Convention on Human Rights (para 59):

as the council’s failures were intrinsically linked to Mrs X being able to live her life, and continue to do so, as independently as possible and for as long as possible. Not dealing with Mrs X’s assessment with the urgency it required means that the Council, in my view, did not fully consider Mrs X’s dignity in this regard.

 

The PSOW recommended (among other things) that within 6 months (para 66):

the Council commissions training for the First Contact Team on how to ask probing questions during the “What Matters Conversation” designed to tease out crucial information including current diagnoses and prognoses. The training should also remind the First Contact Team that there are cases where a health need and a social care need interlink and that a person with a health need may still require social care assistance.

This report is particularly concerning as it highlights the serious failure of the statutory system of assessment and provision.  In this case the system’s initial response was to deny that support was available.  It then made a referral to a reablement unit that was not taking new work.  If this is the way the system responds to a woman with a terminal diagnosis, one has to ask – “how many other people has it failed?”

The Pembrokeshire PSOW report and the previous assessment and care planning reports that have been made available on the Rhydian: Social Welfare Law in Wales news page,[2] are a salutary reminder that the assessment and the management of care and support under the Social Services and Wellbeing (Wales) Act 2014 continues to fail, at least some people in need of care and support. For every person failed the impact is life changing.

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[1] A report by the Public Services Ombudsman for Wales concerning Pembrokeshire County Council Case:  201806802 8 November 2019.
[2] See Gwynedd County Council   (2016); Gwynedd County Council (2018); and Anglesey County Council (2019).

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Photograph of ‘Mynydd Grug’ (Heather Mountain) by Richard Jones -@lluniaurich

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