Report by the Health Service Ombudsman for England of an investigation into a complaint made by Mr and Mrs M

This is the report on the investigation into Mr and Mrs M’s complaint about Dr K, South Essex Emergency Doctors Service (SEEDS), NHS South West Essex (the PCT), and Basildon and Thurrock University Hospitals NHS Foundation Trust (the Trust).  This report contains our findings, conclusions and recommendations with regard to Mr and Mrs M’s areas of concern.

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Foreword

I am laying before Parliament under section 14(4) of the Health Service Commissioners Act 1993  this report about a young woman, B, with severe physical and learning disabilities who died in January 2009. 

Mr and Mrs M, B’s parents, complained about a GP, South Essex Emergency Doctors Service, NHS South West Essex (the former primary care trust), and Basildon and Thurrock University Hospitals NHS Foundation Trust.  Our investigation found service failure on the part of South Essex Emergency Doctors Service and Basildon and Thurrock University Hospitals NHS Foundation Trust and that this service failure had resulted in unremedied injustice to B and to her parents. 

In March 2009 my predecessor, Ann Abraham, and the Local Government Ombudsman, Jerry White, published Six Lives: the provision of public services to people with learning disabilities; six reports that illustrated some significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care.  This report tells a similarly upsetting story and is a reminder that even four years on, we continue to see these shocking complaints.

Dame Julie Mellor, DBE
Health Service Ombudsman
May 2013

Summary

The complaint

1. B (aged 23) had learning disabilities, epilepsy, Russell-Silver syndrome (a form of dwarfism), and severe scoliosis of the spine (abnormal curvature of the spine).  She was cared for at home by her parents, Mr and Mrs M.
2. On 21 January 2009 B developed a cough.  The next day, Dr K, a GP at the family’s local practice (the Practice), visited her at home.  He diagnosed acute lower respiratory tract infection and advised her parents to continue giving her antibiotics that had been started the previous day. 
3. Overnight Mr and Mrs M became concerned about B’s condition, so Mrs M contacted the Practice at approximately 10am on 23 January and requested a further home visit.  No one from the Practice visited B on 23 January, but Dr K telephoned the family home at approximately 4pm and spoke to Mr M.
4. Throughout the night B’s condition got worse, so at approximately 2.30am on 24 January, Mrs M telephoned the out-of-hours service, SEEDS.  She asked for an urgent home visit for B, but the SEEDS doctor declined to visit her.  Instead, the SEEDS doctor said that he would send a message to the Practice requesting a home visit the next morning.  However, because the next day was a Saturday, the Practice would not be open.
5. At 6.30am on Sunday 25 January Mrs M contacted SEEDS again and a doctor visited B at home.  The doctor arranged for B to be taken to the Trust’s Basildon Hospital (the Hospital).  B remained in the Hospital until 30 January, when she died.
6. Mr and Mrs M complained that Dr K did not diagnose their daughter’s condition and that he had refused to make a second home visit on 23 January, so missing a further opportunity to make a diagnosis.  Mr and Mrs M complained that when they first contacted SEEDS, the doctor had refused to make a home visit when they asked him to and that, as a result, he had missed an opportunity to diagnose their daughter’s condition.  Mr and Mrs M also complained about the way the PCT had handled their subsequent complaints about Dr K and the SEEDS doctor.
7. Lastly, Mr and Mrs M complained about the care and treatment provided for their daughter by the Hospital.  The matters that concerned them, and which we investigated, were:
   • delays in diagnosing and treating their daughter’s condition;
   • the management of their daughter’s epilepsy;
   • doctors’ communication with them about their daughter’s condition; and
   • the absence of a transition plan that they had discussed with the Trust in 2006 to ensure that staff in adult services were aware of their daughter’s complex health needs and her family’s role in her care.

What we found

Dr K

8. We found that Dr K had taken appropriate action to assess and diagnose B’s condition in line with the General Medical Council’s Good Medical Practice and established good practice.  We found that Dr K had taken reasonable decisions about B’s care and treatment, based on all relevant considerations.  He considered the history he had obtained from speaking to B’s parents and his examination findings, and prescribed appropriately to treat the lower respiratory tract infection that he had diagnosed.  We also found that in planning and providing care to B, Dr K had had regard to his obligations to her under disability discrimination law.  Therefore, we found no service failure with regard to the care and treatment Dr K provided for B.

SEEDS

9. We found that the first SEEDS doctor Mrs M had spoken to had not taken appropriate action to assess and diagnose B’s condition in line with Good Medical Practice and established good practice.  This meant that he did not have sufficient information to make an informed decision about B’s further care and treatment.  He did not take reasonable decisions, based on all relevant considerations.  Therefore, we found that his care of B fell so far below the applicable standard that this was service failure.
10. Furthermore, we found no evidence that B’s rights under disability discrimination law were properly considered by the SEEDS doctor.  Therefore, we concluded that in planning and providing care to B, the SEEDS doctor had not had regard to his obligations to her under disability discrimination law.  We found that the SEEDS doctor’s failings in this respect were so serious as to constitute service failure.

The PCT

11. We found shortcomings in the PCT’s handling of Mr and Mrs M’s complaint: a misleading statement in its investigation report about advice it had received from the National Clinical Assessment Service; and its failure to investigate the timing of a prescription for antibiotics (which the records said Dr K had written out on 21 January 2009, but which Mr and Mrs M maintained had been written out during Dr K’s home visit to their daughter on 22 January).
12. However, we weighed up these shortcomings against the things it did get right.  The PCT was ‘being customer focused’ when it took prompt steps to find Mr and Mrs M an alternative GP practice; when it arranged to meet them to ensure that it understood their complaints properly; and when it took steps to liaise with the Trust to ensure that Mr and Mrs M’s complaints about B’s hospital care were also investigated.  In addition, we found that the PCT had ‘acted fairly and proportionately’ when it commissioned a thorough investigation of Mr and Mrs M’s complaints about Dr K and the SEEDS doctor by someone not involved in the events leading to their complaint; and when, at the end of the investigation, it explained what further action it would be taking.
13. Mr and Mrs M complained that the PCT had not found out all the information relevant to their complaints and had not investigated their complaints properly.  However, this was a serious complaint and we recognised that it would not have been straightforward for the PCT’s staff to investigate.  Therefore, taken as a whole, we did not find that the PCT’s handling of Mr and Mrs M’s complaint fell so far below the applicable standard that it amounted to maladministration.

The Trust

14. We found that there was a prolonged delay before B received the treatment that her condition called for.  The Hospital’s on-call consultant had acknowledged that it would have been established good practice to treat B’s ‘severe pneumonia’ with intravenous antibiotics and intravenous fluids, but doctors did not do so.  Doctors did not take reasonable decisions, based on all relevant considerations, because they did not consider B’s best interests, in line with the Mental Capacity Act 2005.  Instead, they allowed B to carry on drinking, despite the risk of aspiration (that she might breathe in the fluids), and they tried to give her oral antibiotics, which her records show she was refusing to take.  We also found that doctors did not consider transferring B to a high dependency unit, as established good practice says they should have done, and that reviews of her condition by consultants and junior doctors were not as frequent as guidance published by the Royal College of Physicians in 2007 says they should have been.  In these regards, we found that B’s doctors did not ‘get it right’ and that their care and treatment of her fell so far below the applicable standard that this was service failure.
15. Although we found a shortcoming (a mistake in writing up a prescription for the drug, midazolam), we were satisfied that doctors’ management of B’s epilepsy did not fall so far below the applicable standard that it amounted to service failure.  This was because a specialist, a consultant neurologist, was involved in the management and treatment of B’s epilepsy, in line with guidance issued by the National Institute for Health and Clinical Excellence (NICE) in 2004, and the decisions he made about her anticonvulsant medication were appropriate.
16. B’s medical records showed that in some instances doctors did ‘get it right’ because they were ‘customer focused’ and dealt with Mr and Mrs M helpfully and sensitively bearing in mind their individual circumstances, and kept them informed about their daughter’s condition and treatment in line with Good Medical Practice.  However, we found that there were other instances, notably a discussion between Mrs M and an on-call consultant on 25 January, where doctors did not carry out their discussions appropriately.  While we could not tell from the records how sensitive doctors were in providing information, we had no reason to doubt Mr and Mrs M’s account of their conversations with doctors.  We found that on these occasions doctors’ communication fell so far below the applicable standard that this was service failure.
17. In response to our enquiries, the Trust said that the issue of a paediatric transitional care policy would not have been relevant to the management of B’s care at the time of her admission to the Hospital in January 2009, because by then B was already an adult.  The Trust argued that as B’s condition was chest-based and she was transferred to a chest ward under the care of a chest physician, her care was appropriate, and that the lack of a transition care plan did not have any impact on her.
18. We acknowledged the points the Trust had made, but the fact remained that it had undertaken to put in place a transition care plan for B in 2006, in line with the National Service Framework for Children, Young People and Maternity Services published by the Department of Health in 2004, but had not done so.  Furthermore, when it met Mr and Mrs M in 2009 it had raised their expectations about a transition care planning policy but again had failed to keep its promise.  The Trust was not ‘customer focused’ because it did not keep to its commitments and we found that in this regard its actions fell so far below the applicable standard that this was service failure.
19. The Trust had arranged a review of B’s care and treatment during her time in the Hospital by its Learning Disabilities Nurse Advisor and it provided us with a copy of her review.  This pointed to a number of areas of ‘good practice’.  However, the Learning Disabilities Nurse Advisor also identified several ‘areas of concern’: a medical registrar’s failure to carry out an assessment of B’s capacity (in line with the Mental Capacity Act 2005) before considering what might be in her best interests; that it was not clear whether doctors had discussed with B’s family the possible consequences of Mrs M refusing intravenous medication on her daughter’s behalf; and the sister in charge’s failure to document what action was taken to resolve Mrs M’s complaints about the care B was receiving.
20. In addition, we found nothing to indicate that B’s doctors had made it clear to Mr and Mrs M that B was unlikely to improve if she only received oral antibiotics (and oral fluids).  Furthermore, we found that her doctors did not have proper regard for B’s best interests in the decisions they made about her care and treatment.  The on-call consultant who treated B had acknowledged that they did not provide her with the optimum treatment.  Therefore, although there were many areas of B’s care that were planned and delivered with proper consideration for her rights under disability discrimination law, we found that there were other areas where B’s rights were not properly considered.  We concluded that in planning and providing care to B in these important areas, the Trust’s staff did not have proper regard for their obligations to her under disability discrimination law and we found that their failings in this respect were serious enough to constitute service failure.

Injustice

21. We found that B’s rights under disability discrimination law were not properly considered by the SEEDS doctor and the Trust.  We found that if they had been, the SEEDS doctor would have visited her and she would have received appropriate treatment more quickly, and once she reached the Hospital, her care and treatment might have been better planned and delivered.
22. We found that when Mrs M contacted SEEDS on 24 January 2009, the SEEDS doctor should have arranged to visit B at home, so that he could adequately assess her condition and arrange treatment where necessary.  Because he did not do so, he did not put himself in a position where he could make an informed decision about her further care.  Therefore, we found that an opportunity had been missed to get B to hospital as early as possible for treatment and this missed opportunity was the injustice to B that arose in consequence of the service failure we identified.
23. We also found that when B arrived at the Hospital, doctors did not provide her with the treatment that her condition called for.  We found that it would have significantly improved B’s prospects of surviving her illness: if she had been prevented from eating and drinking; if she had received immediate intravenous antibiotics and active rehydration after admission; and if advice had been sought from an intensive care doctor and consideration given to a transfer to a high dependency unit.  We found that B’s doctors had missed any opportunity there might have been – however small – to save her life by providing earlier and more intensive treatment for her.  Again, this missed opportunity was the injustice to B that arose in consequence of the service failure we identified.
24. We acknowledged that it was possible B might have recovered from her illness.  However, from the evidence we had seen and the advice we had received, we could not say on the balance of probabilities that B would have survived her illness, but for the service failure we had identified.  Therefore, we could not say that B’s death could have been avoided.  Nonetheless, we recognised that Mr and Mrs M would never know whether B would have survived if the SEEDS doctor had visited her at home on 24 January 2009 and referred her to the Hospital, and if doctors at the Hospital had treated her with intravenous antibiotics and fluids sooner and admitted her to a high dependency unit for a higher level of care.  We recognised that this uncertainty was likely to be a continuing source of distress for Mr and Mrs M and was an injustice to them that arose from the service failure we had identified.
25. We saw no evidence that the Trust’s failure to produce a plan for B’s transition from children’s to adult services affected the care and treatment she received when she was admitted to the Hospital in January 2009.  However, we recognised that the lack of a transition plan and the inappropriate comments doctors made during some of their conversations with B’s family would have added to Mr and Mrs M’s distress at this difficult time.  This was a further injustice to Mr and Mrs M that arose in consequence of the service failure we identified.

Recommendations

SEEDS

26. In recognition of the injustice suffered by Mr and Mrs M, we recommended that SEEDS should write to them with an open and honest acknowledgement of the failings we identified and an apology for the impact these failings had on B and on them.  We also asked SEEDS to pay Mr and Mrs M £1,000 by way of financial redress.
27. We were satisfied that the SEEDS doctor had learnt lessons from the failings identified in the partly upheld complaint and that other patients were unlikely to experience the same poor service that B and her parents received.  However, we recommended that SEEDS should prepare an action plan that described what it had done and/or planned to do, to ensure that the organisation had learnt lessons from the failings identified in the partly upheld complaint and to avoid a recurrence of these failings.

The Trust

28. In recognition of the injustice suffered by Mr and Mrs M, we recommended that the Trust should write to them with an open and honest acknowledgement of the failings we identified and an apology for the impact these failings had on B and on them.  We also asked the Trust to pay Mr and Mrs M £2,000 by way of financial redress. 
29. In addition, we recommended that the Trust should prepare an action plan that described what it had done and/or planned to do, to ensure that the organisation and individual doctors had learnt lessons from the failings identified in the partly upheld complaint and to avoid a recurrence of these failings.
30. Lastly, we recommended that the Trust should send Mr and Mrs M a summary of the key actions it had taken to ensure that it had delivered on its commitment to the Department of Health following the recommendation to all NHS organisations in the Six Lives¹ overview report.
31. SEEDS and the Trust have agreed to accept our findings and our recommendations.