A practice in the Arun area

The Practice

4. Miss C complains about aspects of the care and treatment provided to her mother, Mrs F, by the Practice from September 2021 to February 2022. She says:

• The Practice failed to thoroughly investigate symptoms reported by Mrs F, including difficulty swallowing, choking, coughing, weight loss, bloating, constipation, nausea, stomach pain, and occasional chest pain, and overlooked previous clinical tests and results, specifically including results from a CT pulmonary angiogram conducted in September 2020 and an echocardiogram in 2018.

• The Practice failed to communicate risks, specifically including side effects of the medication Alendronic Acid, and test results with Mrs F and her family, specifically including mitral regurgitation identified by an echocardiogram in 2018.

5. Miss C says the Practice’s failings meant Mrs F was not diagnosed with oesophageal achalasia cardia before her death. Because of this, Miss C says she struggled physically, mentally and financially to care for her mother and come to terms with her death. Miss C told us she felt traumatised by her mother’s end of life experience and was unable to return to work for approximately 18 months following Mrs F’s death. Miss C says she still struggles to return to the Practice because of the way her mother was treated and, if she does require medical intervention, she will try to get an appointment with one of the duty doctors at the Practice instead.

6. As an outcome of this complaint, Miss C would like an explanation for the decisions and actions surrounding her mother’s care and treatment. Miss C would also like the Practice to implement service improvements to prevent other families suffering the same fate in the future.

UHS

7. Miss C complains about aspects of the care and treatment provided to her mother, Mrs F, by UHS in September 2020. She says it did not inform the family, including Miss C, who acted as Mrs F’s carer, of the results of scans and investigations, specifically mild pooling of fluid in the distal third of Mrs F’s oesophagus identified by an MRI scan in 2020, and an echocardiogram that found mitral regurgitation.

8. Miss C says UHS’s poor communication led to a failure in the future ability to diagnose Mrs F with oesophageal achalasia cardia. Because of this, Miss C struggled to care for Mrs F and come to terms with her death. Miss C felt traumatised by her mother’s end of life experience and was unable to return to work for approximately 18 months following Mrs F’s death.

9. As a result of this complaint, Miss C would like UHS to implement service improvements to prevent similar events occurring in the future.

SCFT

10. Miss C complains about aspects of the care and treatment provided to her mother, Mrs F, by SCFT from January 2022 to February 2022. She says SCFT did not communicate the need for equipment, particularly the need for a hospital bed, with regards to Mrs F’s home care, meaning basic care was not carried out by agency carers supplied by SCFT. This failure in communication led to it withdrawing care without making arrangements for a replacement service.

11. Miss C says the SCFT’s failings meant she struggled to care for her mother both physically, mentally and financially. Miss C says she felt traumatised by her mother’s end‑of‑life experience and was unable to return to work for approximately 18 months following her death.

12. From this complaint, Miss C would like an explanation for the decisions and actions surrounding her mother’s care and treatment. Miss C would also like the SCFT to implement service improvements to prevent other families suffering similarly in the future.

NHS Sussex

13. Miss C complains about aspects of the care planning and commissioning provided to her mother, Mrs F, by the All Age Continuing Care Team at NHS Sussex (the ICB) during February 2022. She says:

• The ICB failed to communicate the essential equipment required for Mrs F’s home care, particularly the need for a hospital bed, which meant carers could not deliver basic care. The ICB also did not signpost Mrs F’s family to the appropriate equipment that would have supported her care.

• On 9 February 2022, the ICB failed to fulfil the necessary care, meaning Mrs F was left in wet bedding all day.

• The ICB failed to properly manage and deliver a night sitting service, including ignoring the family’s concerns, providing unqualified staff, and giving incorrect information about the support available.

• The ICB failed to accurately record conversations with the family and communicated poorly throughout, resulting in confusion, distress, and essential care needs being overlooked, including incontinence pads, catheter support, requests for additional care or potential care home or hospice placement, and the need for a hospital bed.

14. Miss C says the ICB’s failings meant she struggled to care for her mother both physically, mentally and financially. Miss C says she felt traumatised by her mother’s end‑of‑life experience and was unable to return to work for approximately 18 months following her death.

15. As an outcome of this complaint, Miss C would like an explanation for the decisions and actions surrounding her mother’s care and treatment. Miss C would also like the ICB to implement service improvements to prevent other families suffering a similar experience in the future.

The Hospice

16. Miss C complains about aspects of the care and treatment provided to her mother, Mrs F, by the Hospice from January 2022 to February 2022. She says:

• The Hospice did not offer Mrs F an alternative way to take oral medication, despite her difficulties swallowing.

• The Hospice did not accurately record conversations with the family, leading to miscommunication and a lack of essential care, particularly with regards to the equipment required to appropriately care for Mrs F.

17. Miss C says the Hospice’s actions meant she struggled to care for Mrs F and come to terms with her death. Miss C felt traumatised by her mother’s end of life experience and was unable to return to work for approximately 18 months following Mrs F’s death.

18. As a result of this complaint, Miss C would like an explanation for the decisions and actions surrounding her mother’s care and treatment. Miss C would also like the Hospice to implement service improvements to prevent other families suffering similarly in the future.

20. The ‘Health Service Commissioners Act 1993’ (the Act) says a person needs to bring their complaint to us within a year of becoming aware of the problem. We cannot investigate complaints brought to us after one year, unless we consider there is good reason to do so. We have discussed this with Miss C to understand the reasons why she could not bring her complaint to us sooner. We have also considered the time taken for this complaint to be assessed and responded to by all the organisations involved.

21. Miss C told us she knew in February 2022 that she had reason to complain about the events discussed in the complaint. With the Act in mind, this means Miss C needed to bring her complaint to us by February 2023, unless it was not reasonable for her to do so. Miss C did not bring her complaint to us until November 2024, which means she approached us approximately 1 year and 8 months outside of our time limit. This is a significant period.

22. As such, we looked at what happened between February 2022, when Miss C became aware of her reason to complain, and when she approached us in November 2024.

23. We reviewed the complaint file from the ICB, and the complaint correspondence and information submitted to us by Miss C. We can see Miss C made her complaint about all of the organisations involved in July 2022, and she made that complaint to the ICB. This means there is a gap of approximately 4 months from when Miss C corresponded with the ICB about her complaint, to when she submitted her formal points of complaint to it in July.

24. Miss C explained this period of her life was marked by profound grief. Her mother had sadly passed away in February 2022, and she was left to prepare the funeral alone whilst trying to navigate the practicalities that follow a bereavement. She described the emotional and mental toll of managing probate, identifying her mother’s assets, and working through an overwhelming amount of paperwork, as well as managing her mother’s pensions, income, household bills, and ongoing issues with utilities. The administrative delays and complications that followed COVID-19 only made everything feel heavier.

25. She told us there were moments when she simply could not cope, especially as she was also facing financial hardship and trying to get support from the job centre. Miss C has also provided evidence that her GP signed her off as ‘not fit to work’ from April 2022 until December 2022. Given the burden she was carrying at this time, she explained it was extremely difficult for her to progress the complaint and that she did so as soon as she was able.

26. Once Miss C submitted her points of complaint, it is clear she made a genuine effort to keep the process moving with the ICB. She stayed in regular contact until she received the first set of responses in November and continued to engage with the ICB whilst she worked through drafting her replies and arranging meetings with it. Although she did not send her formal responses to the ICB until June 2023, the correspondence received from the ICB shows she was actively involved in the process and put considerable work into preparing her complaint during that period.

27. The ICB sent Miss C the final set of responses from the organisations in April 2024. Miss C explained she found it difficult to manage that the ICB sent these all in one go rather than sending her each individual response as it received them. She told us this was one of the reasons for her delay in continuing her complaint from this point.

28. When the ICB sent this final set of responses, it advised Miss C that it had now completed all investigations into the complaint and suggested she escalated her concerns to us if she remained dissatisfied. Miss C did not contact the ICB again until October 2024 and did not approach us until November 2024. This is a gap of approximately 6 months in progressing her complaint.

29. We acknowledge the ICB’s complaint process was lengthy, and we wish to reassure Miss C that she has not been penalised for this. Our consideration has explored the periods where Miss C could have advanced her complaint, rather than the periods she could not because she was waiting for responses from the ICB to move forward. The amount of time between Miss C receiving the final responses from the ICB and approaching us is significant.

30. When we discussed this with Miss C, she explained how much she was managing during that period. She told us she was returning to work after many years, searching for jobs, and coping with a bereavement that led to her being signed off sick. She also took on several new roles whilst completing an online course. In addition, Miss C told us she was signed off work due to illness from July to September 2024 and this affected her ability to progress the complaint at that time.

31. Miss C says reading the complaint responses was very traumatic for her, and she did not receive the clinical notes to compare them with until later, which meant going through a large amount of paperwork and trying to make sense of dates that did not align. Miss C also told us how difficult it was to understand the responses and how much time it took to type everything up so she could process what each organisation was saying.

32. We have considered what Miss C has told us. Having done so, we are unable to set our time limit aside.

33. We recognise Miss C’s struggles during this time, including an illness which led to her being signed off sick from work for approximately three months, and that she was grieving the loss of her mother, managing work, and struggling with illness, amongst other factors. We recognise loss can be a profoundly difficult experience and we do not underestimate how stressful this time must have been for her. We must also consider whether the factors described prevented Miss C from making a complaint.

34. We understand some people find complaining upsetting, time-consuming, and stressful and, in those cases, it is open to them to access free NHS advocacy services which can help with the process. In this case, advocacy services would have been able to support Miss C with the emotional and practical difficulties she describes. We also note that it was not necessary for Miss C to receive the clinical notes of her mother’s care in order to progress her concerns to the next stage in the complaints process.

35. Miss C has not shared with us any information which shows she would have been unable to progress a complaint with the help of advocacy support, nor that she pursued that option. We have not seen any barrier to her doing so. As such, we have not seen anything that would allow us to set aside our time limit.

36. Because of this, we have decided not to consider this complaint further. We acknowledge our decision will be disappointing for Miss C and we do not wish to undermine what she has told us or devalue the amount of work she has put into this complaint during those periods where she was taking action. We hope we have clearly explained how we reached our decision and why we are not able to set our time limit to one side in this case.

1. We have carefully considered Miss C’s complaint about University Hospitals Sussex NHS Foundation Trust (UHS), Sussex Community NHS Foundation Trust (SCFT), NHS Sussex, a Hospice in West Sussex (the Hospice), and a GP Practice in West Sussex (the Practice).

2. We are sorry to hear about the circumstances surrounding Miss C’s complaint. We recognise the upset and distress she has faced because of the loss of her mother, Mrs F, and how profoundly this has affected her.

3. Having considered the evidence available, we can see Miss C’s complaint falls outside our one-year time limit and we are unable to set the time limit aside. We recognise our decision will likely be disappointing for Miss C, and we explain the reasons for our decision below.