Emma Kemp
Jump to
Summary report of an investigation by the Health Service Ombudsman of a complaint made by Mencap on behalf of Mrs Jane Kemp in relation to her late daughter, Miss Emma Kemp.
Complainant:
Mrs Jane Kemp
Aggrieved:
Miss Emma Kemp (Mrs Kemp’s late daughter)
Representative:
Mencap
Complaint against:
NEWDOC GP out of hours service
Falkland Surgery
Eastfield House Surgery
Royal Berkshire NHS Foundation Trust (the Trust)
Healthcare Commission
Background
How the Ombudsmen investigated
What the Ombudsmen found and concluded
Background
Miss Kemp was a 26 year old woman with severe learning disabilities who lived in a residential care home. Mrs Kemp described her daughter as a ‘party animal’ who was caring and friendly and loved dressing nicely to go out with her family and friends. She had many interests including dancing, bowling, television and computers. Mrs Kemp said there was not a day in the week when her daughter was not doing something. She was lively, active and always up early, eager to go out. Miss Kemp could understand what people said to her as long as they used simple direct language and she liked talking to people about her activities. She regularly spent time with her mother and grandparents.
In late April 2004 Miss Kemp became unwell and over the following month she was seen by several GPs and community nurses. In late May 2004 she was admitted as an emergency to the Trust and a doctor found a previously unnoticed lump in her groin. Over the next two weeks she underwent various tests before she was discharged to her mother’s home. In mid-June 2004 Mrs Kemp was told by two of the Trust’s cancer specialists (Consultants R and S) that the lump was a non Hodgkin’s lymphoma (a malignant tumour of the lymph system, which is the system that helps the body fight infection). Within days Miss Kemp was readmitted to the Trust because her GP was concerned she was not eating or drinking properly.
Mrs Kemp was dissatisfied with the care and treatment her daughter was receiving at the Trust and she instructed solicitors to ensure the Trust’s actions were in Miss Kemp’s best interests. Mrs Kemp was told by Consultant R that the likelihood of successful treatment of Miss Kemp’s cancer was less than 10%. A second opinion was obtained from a third consultant, Consultant T, which confirmed Consultant R’s view. Mrs Kemp then agreed with the consultants’ proposal that chemotherapy was not in her daughter’s best interests. At the end of June 2004 Miss Kemp was transferred to a specialist facility for palliative care (care which focuses on controlling symptoms, such as pain and discomfort, rather than cure). She died there in July 2004.
The complaint
Mrs Kemp complained that her daughter should have received cancer treatment and
that she should not have died. She said the GPs should have diagnosed her condition earlier and staff at the Trust did not act in her best interests when planning and delivering care and treatment. She believed her daughter had been treated less favourably for reasons related to her learning disabilities.
Mrs Kemp was also dissatisfied with the way her complaint had been handled by the Trust and the Healthcare Commission. She felt the NHS complaints process had failed her and she wanted answers to her questions about the service provided for her daughter.
What should have happened
The NHS staff who looked after Miss Kemp should have been mindful of the overall standard governing their work. This standard is made up of two components: the general standard which is derived from general principles of good administration and, where applicable, public law; and the specific standard which is derived from the legal, policy and administrative framework and the professional standards relevant to the events
in question.
In Miss Kemp’s case, legislation and policy about disability and human rights, in particular the Disability Discrimination Act 1995, the Human Rights Act 1998, Valuing People: A New Strategy for Learning Disability for the 21st Century (2001) and Once a Day: A Primary Care Handbook for people with learning disabilities (1999) were especially relevant to the overall standard.
In terms of professional standards, the doctors and nurses should have followed the standards set out by their regulatory bodies. Miss Kemp’s care and treatment should have met national and professional standards regarding management of cancer patients, general nursing care and discharge arrangements as well as the Trust’s own discharge and consent policies. In addition, NHS staff caring for Miss Kemp should have acted in accordance with the law and professional standards for managing patients who lack capacity to consent to investigations and treatment.
The responses to Mrs Kemp’s complaint should have followed the National Health Service (Complaints) Regulations 2004.
How the Health Service Ombudsman investigated
The investigator met Mrs Kemp to gain a full understanding of her complaint. It was important to carefully consider her recollections and views. Evidence about what happened to Miss Kemp and how her mother’s complaint had been handled was considered. The Trust also provided additional information in response to specific enquiries and investigators met key Trust staff.
Several professional advisers provided expert clinical advice to the Health Service Ombudsman. They were: a professor of oncology; a hospital nurse; a learning disability nurse; and a GP.
Mrs Kemp, her representative and the bodies complained about had the opportunity to comment on the draft report, and their comments were carefully considered before the final report was issued.
What the Health Service Ombudsman found and concluded
The investigation of the complaint against the GPs
Mrs Kemp had not previously complained about the GPs. However, the Health Service Ombudsman exercised her discretion and accepted the complaint for investigation because it was important to consider the whole story about Miss Kemp’s care and treatment.
Mrs Kemp complained that the various GPs who saw her daughter in the month before her cancer was detected did not recognise that Miss Kemp’s symptoms meant she was seriously ill. She said they should have admitted Miss Kemp to hospital for investigation and their inaction resulted in delayed diagnosis and treatment.
The Health Service Ombudsman found that the GPs had no reason to refer Miss Kemp to hospital sooner or to suspect she had cancer. She concluded that there was no reason to criticise the service provided by the GPs. Their actions were in line with national and professional standards and they made reasonable adjustments in their practice with regard to Miss Kemp’s learning disabilities. There was no evidence that they treated her less favourably with regard to her learning disabilities.
Therefore, the Health Service Ombudsman did not uphold the complaint against the GPs.
The investigation of the complaint against the Trust
Mrs Kemp was dissatisfied with the organisation of investigations, with nutrition, hydration, pain relief and discharge planning, and with the standard of accommodation and facilities. Mrs Kemp said her daughter’s condition had deteriorated and she became critically ill because of the poor care she had received and because staff did not act in her best interests.
The Health Service Ombudsman found that the time taken to investigate and diagnose Miss Kemp’s cancer was reasonable and during a biopsy of the lump and a CT scan key staff tried to adapt their practice to meet her needs. She found that on the whole, tests and examinations were carried out in a reasonable way and best interest principles were appropriately applied.
The Health Service Ombudsman found that more could have been done to meet Miss Kemp’s nutrition, hydration and pain relief needs. For example, Trust staff could have made more effective use of the knowledge of Miss Kemp’s family and carers to help them assess her pain. However, the Health Service Ombudsman found no evidence that at any point during either admission to the Trust Miss Kemp’s condition was seriously compromised by lack of fluid or food. Neither did she find that her need for pain relief was ignored or that she was denied pain relief.
Miss Kemp was discharged from hospital to her mother’s home after her first admission when preliminary tests to establish the nature of the lump in her groin had been completed. The Health Service Ombudsman found shortcomings in the Trust’s approach to managing Miss Kemp’s discharge. However, staff did take some action to try and ensure she was safely discharged. On balance, the Health Service Ombudsman did not conclude that discharge arrangements fell significantly below a reasonable standard in the circumstances.
The Health Service Ombudsman found that when Miss Kemp was admitted to the Trust on the second occasion the standard of accommodation and facilities was not ideal. No single room was available on the cancer ward. However, a single room was found close by the specialist ward and in the circumstances the Health Service Ombudsman did not consider this was unreasonable.
Mrs Kemp’s key complaint was that the decision not to treat her daughter’s cancer was made solely because Miss Kemp had learning disabilities. Miss Kemp had a high grade B cell lymphoma for which the usual treatment would be a series of cycles of specialist chemotherapy known as R-CHOP. This involves giving four different drugs intravenously over a period of about six months. The treatment can have serious side-effects, including infection.
During the course of the investigation it became clear that even eminent experts in cancer treatment held different views about whether or not treating Miss Kemp’s cancer was in her best interests. However, it was not for the Health Service Ombudsman to have a clinical opinion about whether or not Miss Kemp should have received treatment for her cancer. The question she asked was whether or not Miss Kemp received a reasonable standard of care and treatment.
The Health Service Ombudsman found that Consultants R and T did act in line with relevant ethical, legal and professional guidance on how they should act when a patient lacks the capacity to consent to treatment. She found they consulted with a wide range of colleagues, weighed up the risks and benefits of treatment and involved Mrs Kemp in their decision. She also found that in the circumstances the decision taken by Consultants R and T was not unreasonable.
The Health Service Ombudsman found no evidence that in making their decision Consultants R and T treated Miss Kemp less favourably with regard to her learning disabilities. That is not to say that if Miss Kemp had not had learning disabilities the decision in relation to her best interests would have been the same. Rather, that they considered the challenges that existed as a result of her learning disabilities and the adjustments that could reasonably be made to address those challenges and concluded that the risk of harm and distress that was likely to be caused by the treatment outweighed the benefit that was likely to be obtained. In different circumstances those assessments of risk and benefit might well have been different, but these were the circumstances that Consultants R and T were faced with in Miss Kemp’s case.
The Health Service Ombudsman found no service failure in the care and treatment provided for Miss Kemp by the Trust. Therefore, she did not uphold this aspect of the complaint against the Trust.
The investigation of complaint handling by the Trust
Mrs Kemp was dissatisfied with the way the Trust handled her complaint and the Health Service Ombudsman found the Trust failed to comply fully with the applicable regulations. In particular, the Trust’s actions did not accord with principles of good administration and it did not provide an appropriate or adequate remedy.
The Health Service Ombudsman concluded these failings amounted to maladministration but that this did not occur for disability related reasons. She upheld this aspect of Mrs Kemp’s complaint but made no recommendation for further remedy because the Trust had apologised and taken appropriate action to address the failings she identified.
The investigation of the complaint against the Healthcare Commission
Mrs Kemp was dissatisfied with the way the Healthcare Commission reviewed her complaint. She said the review took too long and did not provide her with the answers she sought.
The Healthcare Commission reviewed this complaint twice because Mrs Kemp was dissatisfied with the first review. The Health Service Ombudsman found that the Healthcare Commission’s first review was flawed because it did not take advice from a suitably qualified clinician. This rendered its decision unreliable and unsafe and was maladministration. However, overall the Healthcare Commission’s second review was reasonable and in line with the applicable standard. The Health Service Ombudsman did not find maladministration with regard to delay. She concluded that any injustice arising from the maladministration relating to the Healthcare Commission’s first review was remedied by the second review and there was no service failure in the Healthcare Commission’s complaint handling.
Therefore, she did not uphold the complaint against the Healthcare Commission.
Was Miss Kemp treated less favourably for reasons related to her learning disabilities?
The Health Service Ombudsman found no evidence that Miss Kemp was treated less favourably by the GPs or the Trust for reasons related to her learning disabilities.
Was Miss Kemp’s death avoidable?
The Health Service Ombudsman found no service failure or maladministration relating to the decision not to treat Miss Kemp’s cancer. On that basis, her finding was that Miss Kemp’s death did not arise in consequence of any service failure or maladministration. Therefore, she did not conclude that Miss Kemp’s death was avoidable. It will never be known whether Miss Kemp would have survived had she received chemotherapy, or whether the intensive treatment which this involved or the side-effects of that treatment would in fact have hastened her death, but that was not the subject of the Health Service Ombudsman’s investigation.
The complainant’s response
Mrs Kemp was dissatisfied with the outcome of the investigation. Mrs Kemp said she strongly believed that Miss Kemp did not receive a reasonable standard of care, that she should have been treated with chemotherapy and that the decision not to treat her cancer was for reasons related to her learning disabilities.
