HIV+ Mother and Baby Loss

posted: 24/03/2010

The HIV positive mother of a 10 month old baby boy died two days after her own son, who starved to death. The real causes of the mother and baby deaths seem to be the mother’s mental ill-health and HIV stigma, along with missed opportunities and possible failings by health and social care services.
 

The 10-month-old boy wasted away in his pram at his mother's London flat where he was seen at least 15 times, in six months, by nine care professionals. Although experts were concerned about the child's deteriorating health, not enough was done to save the child, because officials and help were turned away by the mother.
 

The baby was found dead, emaciated and surrounded by rotting food on March 8 after a 999 call from his mother's council flat. The post-mortem showed his stomach was empty and he had not eaten for days. He had suffered a 'long period of malnourishment' and his weight had plummeted since Christmas by a third, to 12.5lb.
 

Interpreter refused because of stigma fears

Police began a murder inquiry and his 29-year-old migrant mother was arrested for child neglect. She had avoided contact with care services by saying her human rights would be breached if they used an interpreter to question her - in case the close-knit Eritrean community found out she had HIV. She was allowed to keep both her baby boy and his four-year-old sister.
 

Mum's failing mental health

There were concerns about her parenting skills, she was 'hearing voices' and had expressed fears for her baby's health. After her arrest she was rushed to hospital after only an hour, where she died two days after her son, from a rare brain condition linked to HIV.
 

George House Trust comment
 

This item is based on a Daily Mail news report (the only source we have found) that blamed health and children’s social services for the baby’s death.

We think that the real story is that

• The mother was seriously mentally ill with a rare HIV-related rare brain condition and seems not to have had treatment for this. Her own neglected long-term mental illness caused the child's neglect – like she neglected her own health, dying just two days after her son.
• The mother was very worried by HIV stigma and rejection by the local Eritrean community. So she refused to allow services to use any interpreter because she feared her HIV status would then become known among Eritreans.

There is not enough information to fairly judge whether health and social care services failed, because the Daily Mail's confidential information came from just one of many services that were involved. 

Lessons and issues

However it does appear that there are useful lessons to be learned from holding a multi-agency case review. It's not simply about 'what should have been done to protect her baby boy' but about meeting her own needs for mental health support and treatment. There are difficult ethical dilemmas - like everyone else she has autonomy, the right to decide about her own treatment and care. No-one can force competent adults to have treatment they don't want. But was she able to look after her own health when she was showing significant symptoms of mental distress? And should we use different rules when there is a baby involved? Why wasn't telephone interpretation provided (this would have protected her identity)?

This was a family of three in crisis for some months and only the baby seems to have been of concern - the whole family's situation and needs seem to have been overlooked.  

HIV stigma is dangerous

This is one more case demonstrating why challenging and ending HIV stigma, especially among vulnerable migrant communities, is so important.

Some more detail on the deaths and the events leading up to these

In September 2009, she was rehoused in London after moving from Birmingham after she was beaten up by her partner. A series of visits by health visitors and social workers from Westminster City Council followed. But despite a growing file of evidence that all was not well, nothing was done. The last visit to the flat in St John's Wood was made on March 1. A week later, the boy was dead in his pram. A neighbour said: 'We used to hear her baby and an older child crying all the time. On March 8 my son heard a scream at around seven in the morning.'
 

Two health trusts were responsible for the family. A confidential report by one of the trusts - the Central and North West London NHS Foundation Trust said: 'Post mortem results on the infant showed that he had no food in his gut at all and so had not eaten for several days at least. However, there is evidence of a long period of malnourishment.' But, after a nine-day investigation, the report concluded there are no lessons to be learnt.
 

Michael O'Connor, Westminster City Council's director for children and young people, said: 'Neither of the children were on the child protection register and there is no suggestion that they were at risk.'

Terry Bamford of Westminster's Local Safeguarding Children Board, said an independent serious case review would take place. Central and North West London Trust refused to comment and Imperial College Healthcare NHS Trust said it was carrying out its own inquiry.
 

'Fit Notes', Not Sick Notes

posted: 29/05/2009

‘Fit Notes’ will replace Sick Notes from spring 2010. This follows Dame Carol Black’s recommendations on the health of people of working age last year, so the government have announced that GP’s will soon be issuing ‘fit notes’ instead of sick notes.

These new ‘fit notes’ will be given out to people from spring next year. In the words of the Department for Work and Pensions press release, they will:

“….enable people to get the best possible advice about staying in work, and if they can't work, what their employer can do to help them return to work sooner. For example, if the employee has a problem with mobility, suggesting a job where they can work sitting down rather than standing up.”

You can have your say - a 12 week consultation on the Fit Note’s design started yesterday and will end in mid August.

The consultation document is called Reforming the Medical Statement

Having Your Say

Comments on any aspect of the draft regulations to:
Shelley Fuller,  Medical Statement Consultation, Department for Work and Pensions,
Health, Work and Well-being Directorate
2nd Floor, Caxton House, Tothill Street, London, SW1H 9DA
020 7449 5586
Email

HIV impact?

The new 'fit notes' are intended to help more people stay in work, rather than drift into long term sickness. This could help people with HIV who are working, by giving people with HIV written medical backing to get the employer to make 'reasonable adjustments' to your working arrangements.

They propose that the doctor should tick boxes next to a short list of basic adjustments. These are

• a phased return to work
• altered hours
• amended duties
• workplace adaptations, and
• the consultation asks whether occupational health assesssments should be added
• we  ask whether there should be a box for the doctor to add any other suggestions.

GP telling employers about HIV is a risk

From a first look at the proposals we have a major concern. The rules (rule 6) and proposed Fit Note itself require doctors to name the condition as precisely as possible that  makes the person fit or unfit for work. This means naming HIV.

There is a special exception rule (rule 9) that allows the doctor to state less precisely the condition in cases where disclosure of the precise condition would influence the patient’s well-being or the patient’s position with their employer.

George House Trust thinks this needs to be made a requirement for GPs and it should spell this out and name HIV as an example in Guidance to GPs and on the Fit Note form itself.

Government comments on Fit Notes

Lord Bill McKenzie, Work and Pensions Minister, said:

"Employers tell us that managing sickness absence can be a challenge. This is compounded by a 'sick note' system that makes sickness absence a black and white issue - either you are unfit for work, or you are not. We recognise how important it is to help people who are sick to stay in work or get back to work quickly - the new fit note will help do just that."

Health Minister Ben Bradshaw said:

"We know that sickness absence is economically and socially damaging and makes people more likely to drift into social exclusion and poverty. Getting people back into work quicker is good for their health as well as the country's finances. The fit note will give GPs a new opportunity to benefit their patients and I look forward to it being used in surgeries everywhere."

Developed with the support of healthcare professionals, employer representatives and trade unions, the new 'fit notes' will roll-out across Great Britain in the Spring of 2010.

The new 'fit notes' will be computer-generated in GPs surgeries, replacing the neatly hand-written - or possibly illegibly scrawled - doctor's sick notes.

The full Government response to Dame Carol Black's report.

Employment lawyer's view

Morag Hutchison, at employment law firm Pinsent Masons, said that the new scheme is likely to benefit both employers and their staff. 

“The current system causes problems for employers because there is no consideration of whether the employee is fit to perform some duties of their role even if they are unable to perform all the duties of their role,” she said. “If GPs are asked to give an indication of what an employee can do, that will enable the employer to consider whether their role can be adapted so they can return to work sooner than might otherwise by the case.”

Hutchison said that employees who are signed-off work can become detached from the workplace, particularly in cases of stress, making it harder for them to return to work.

“If a GP gives an indication of the tasks the employee could perform, that would help the employer to get them back to work sooner and is more likely to result in a positive outcome for both the employer and the employee,” she said.

The current system can cause problems for employees too, according to Hutchison.

“The issue of redundancy selection criteria is of particular relevance in the current climate,” she said. “Employers often use absence records as a selection criteria for redundancy. Under the proposed system an employee's absence record is likely to be reduced as they may be able to attend for work albeit it to perform a reduced role.”

Many employees are not entitled to any sick pay over and above their statutory sick pay entitlement which can result in them losing a significant proportion of their income if they are off sick. “Again, under the new system, there may be occasions when they are able to attend for work to carry out a reduced role whereas under the current system they would just have been signed off,” said Hutchison.

GPs are expected to have to spend more time with individuals to establish what parts of their job they are fit to perform, but Hutchison expects employers and employees to welcome the plans.

“The introduction of ‘fit notes’ would, on the face of it, appear to be a positive move for both employers and employees,” she said.

Reforming the Medical Statement consultation