The Care Act and M.E. – Positive Decision by the Ombudsman and Case Study| 06 August 2019


Neil Riley, Chairman, ME Association.

A recent decision by the Ombudsman for Local Government and Social Care shines much needed light on the difficulty that some people with M.E. face in getting the help they are entitled to under The Care Act 2014.

Under the Act your local authority has a duty to carry out an assessment to determine your eligibility for care and support. The aim is to improve your quality of life and help you live independently.

Fluctuating Needs

There are guidelines that your Council must follow when it assesses your needs. One of these provide that the condition of an individual at the time of the assessment may not be entirely indicative of their needs generally.

Therefore, local authorities must consider whether your current level of need is likely to fluctuate. This means looking at your care and support history over a period of time and then considering what fluctuations in need can reasonably be expected based on the experience of others with a similar condition.

Real-life Example

In the case of Miss X, an M.E. sufferer for 25 years, an original award of 24 hours per week of care by her local authority was reassessed and reduced to just 3 hours without any explanation.

Miss X appealed and a reassessment of her needs resulted in an award of 9 hours care. Miss X complained that such an award was insufficient and so a further assessment was made.

This resulted in an award of 27 hours care with which Miss X was satisfied. In addition to the initial reduction in care hours there were also concerns about how the Council had carried out a financial assessment for Miss X.

These appeals, complaints and reassessments took place over 2 years.

Ombudsman Ruling

Eventually a complaint was made by Miss X to the Local Government & Social Care Ombudsman. The investigator’s decision is a damning one. The Council was determined to be at fault:

  • In not taking into account Miss X’s fluctuating needs,
  • In ignoring Miss X’s care and support history,
  • In failing to consider all the disability related expenditure of Miss X.

Moreover, the investigator found that there was a clear injustice proved and the faults by her Council had caused significant distress.

Every M.E. patient is keenly aware of how their symptoms and severity can fluctuate and how drastically this can affect their life from one day to the next. We are ‘reliably unreliable’.

This adjudication makes clear that in assessing your need for care and support, your Council:

  1. Must take fluctuations in your ability to live a normal life into account and take evidence over a period of time and not just a one-off visit.
  2. Must ensure that any financial contributions that are made by you towards the costs of your disability related expenditure are correctly calculated and that your income does not fall below what is called the minimum income guarantee (MIG) as a result.

The Forward ME group of charities has held two meetings with Mrs Isabelle Trowler, Chief Social Worker for Children and Families, where we discussed concerns relating to both inadequate training of social workers about M.E. and the way in which social work assessments of people with M.E. are being carried out. The minutes from the most recent meeting can be read here.

Additional Help

Footnote: Please be aware that the above case example is reflective of the law in England. You can enquire of your local councils in Wales and Scotland as to their guidance regulations.

Image credits: 123RF/ginasanders/Katarzyna Białasiewicz

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