Health

Summary

C, an adult with attention deficit hyperactivity disorder (ADHD), autism, and pathological demand avoidance (PDA) complained that the board failed to diagnose their conditions when they should have done.

C told us that the board said they stopped considering diagnosis of conditions such as ADHD and autism when a patient reached the age of 25 years old. C complained that this practice led to them being misdiagnosed which prevented them from obtaining access to appropriate medication, particularly, medication to help with the management of ADHD.

The board said that the understanding of developmental disorders in adulthood, including high functioning autism and ADHD was very limited during the mid 1990s (when C felt they should have been diagnosed). The board felt any potential delay in diagnosis should be considered in line with the expectations and understanding of psychiatric practice at the time. In C's case, it appears C experienced a number of other physical and mental health problems that would not be solely accounted for by diagnoses of autism and/or ADHD, although these conditions may have been predisposing factors.

We took independent advice from a general adult consultant psychiatrist. We found that the timing of the recognition and diagnoses made were reasonable and that there was no evidence to suggest that the recommended treatment for ADHD was delayed or withheld because of prescriptions of other medications. We also noted, at this point in time, there are appropriate guidelines and clinical guidance for clinicians to follow, in relation to pervasive developmental disorders in adults.

Whilst we recognise that C was not diagnosed with ADHD and autism until relatively recently, we consider that the care and treatment provided to C was reasonable in the circumstances at that time. We also consider treatment provided for other diagnosed conditions was reasonable and did not prevent or delay C's later diagnoses of ADHD and autism.

We noted that the board may have diagnosed these conditions differently in the past but did not see any evidence to suggest that the board's current practice fails to consider diagnoses of ADHD and/or autism in adults over the age of 25 years old.

Therefore, we did not uphold C's complaint. We did note that it may have been helpful to carry out a more detailed ADHD assessment before commencing medication and provided the board with some feedback on this point.

Summary

C complained that they did not receive appropriate care and treatment from their GP practice in relation to the diagnosis and treatment of menopause symptoms.

C felt the practice did not take their menopause symptoms seriously and that GPs were not up to date with current guidance when C was offered antidepressants in response to menopause symptoms. As such, C complained that the practice failed to recognise and appropriately treat the symptoms of menopause, leading to a delay in diagnosis and treatment. The practice considered that the care and treatment provided to C had been reasonable.

We took independent advice from a GP. We found that there had been a number of missed opportunities to diagnose menopause, that consideration had not been given to the relevant NICE Guideline NG23 (National Institute for Health and Care Excellence guideline on Menopause: Diagnosis and Management), and that GPs had failed to consider alternative hormone replacement treatment (HRT) preparations during a period of national shortage. This led to a delay in the diagnosis and treatment of C's menopause. As such, we upheld C's complaint.

Recommendations

What we asked the organisation to do in this case:

• Apologise to C for the delay in diagnosis and treatment of their menopause symptoms. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.

What we said should change to put things right in future:

• Where patients report symptoms of menopause, they should be appropriately assessed in accordance with relevant national guidelines.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.

Summary

C complained about the care and treatment provided to their adult child (A) by the board. A had an extensive history of epilepsy and was diagnosed with ictal asystole (a rare but potentially devastating complication of epileptic seizures). A was referred by the board's neurology service (specialists in disorders of the nervous system) to the cardiology service due to ongoing seizures with loss of consciousness which could not be controlled with medication. A was fitted with a pacemaker but later developed severe headaches and a rash. A was advised to stop taking recently prescribed tablets and that the rash was likely caused by the ointment used when the pacemaker was fitted.

A few days later, A was finding it difficult to breathe and called NHS 24. Paramedics attended A at home but A was not admitted to hospital. A phoned NHS 24 again the following day and when paramedics attended, they took advice from an emergency medical consultant at the hospital who advised that A should take paracetamol and see the GP the following morning.

A was advised by the GP to attend the COVID-19 hub where A collapsed and was taken to hospital. A was admitted to hospital and died the following day from sepsis (a life-threatening reaction to an infection).

C complained that the board's cardiology service failed to provide reasonable care and treatment to A. We took independent advice from a consultant cardiologist. We found that there was a failure to provide a clear timeframe on the day of the pacemaker implantation and a failure to take reasonable action when A developed a rash following the procedure. We also found that the board failed to identify the asystole earlier but had already acknowledged this in their complaint response to C. Given these failings, we upheld this part of C's complaint.

C complained that an emergency medical consultant unreasonably told the paramedic that A should take paracetamol and see the GP the following morning. We took independent advice from a consultant in emergency medicine. We found that there were failings in the assessment of A and that given the deranged physiology (disturbance of normal bodily functioning), repeated presentation and symptoms, the advice provided by the emergency medical consultant was unreasonable. Therefore, we upheld this part of C's complaint.

Finally, C complained that a doctor in the COVID-19 assessment centre unreasonably told C to take A home and put them to bed. We found no evidence to support this. Therefore, in the absence of any supporting records, we did not uphold this part of C's complaint.

Recommendations

What we asked the organisation to do in this case:

• Apologise to C for the failings identified. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.

What we said should change to put things right in future:

• Full and complete information should be obtained during any virtual assessment of a patient so that advice is appropriately provided and recorded on the basis of that information.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.

Due to a technical error, only half of the intended decision summary was published on the 24 May 2023.  The paragraph in italics below was added on 8 January 2024 once the error was identified.

Summary

C complained about the care and treatment provided to their late parent (A). A felt unwell whilst residing in a care home. They were coughing up blood associated with green phlegm and had chest and abdominal pain. Staff at the care home contacted NHS 24 and were advised that a home visit would be conducted. However, the GP subsequently carried out a telephone consultation due to concerns around the transmission of COVID-19. They diagnosed A with a chest infection. A second GP visited 48 hours later and suspected A had pulmonary embolism (a blocked blood vessel in the lungs) and deep vein thrombosis (a blood clot in a vein). A was admitted to hospital where this was confirmed. A died a few months later and C said that pulmonary embolism was described as a contributing factor on their death certificate. C was concerned that the GP did not conduct a home visit and subsequently failed to correctly diagnose A's condition and instead focused on the transmission of COVID-19 and associated risks. C believes that if a home visit had been conducted, A would have been correctly diagnosed 48 hours earlier and could have received treatment.

The board responded and identified some issues in the medical history and documentation taken. C remained dissatisfied with the board's response and brought their complaint to us.

We took independent advice from a GP. We found that it was reasonable that no home visit was offered in the context of COVID-19. However, the medical history and particularly the documentation taken by the GP was unreasonable. In particular, there was no documentation to support the consideration of respiratory rate/breathlessness, leg pain/swelling and pulmonary embolism. In view of these failings, we upheld C's complaint that the board failed to provide A with reasonable care and treatment. The board had already apologised for the failings and had highlighted them to relevant staff as a learning point. However, we  provided some further feedback to the board.

Summary

C complained about the care and treatment provided to their child (A). A developed facial weakness, which was initially diagnosed and treated as Bell's Palsy (temporary weakness or lack of movement affecting one side of the face). A's condition did not improve and MRI scans revealed a mass. It was considered this was likely a vestibular schwannoma (a rare, non-cancerous tumour) and follow-up in three months was arranged.

A later attended hospital with bleeding from the ear. C suspected this was related to the tumour but doctors treated A for an ear infection. A developed further ear symptoms and attended hospital again. Further scans showed significant tumour growth, requiring surgical debulking (removing as much of the tumour as possible). A's diagnosis was revised as para-meningeal rhabdomyosarcoma (a rare and aggressive form of cancer). A was treated with chemotherapy but they continued to deteriorate and died within a few months of this diagnosis.

C complained that the board's decision not to remove A's tumour when it was first detected was unreasonable. We took independent advice from four advisers: a paediatric neurologist (specialist in the diagnosis and treatment of disorders of the nervous system), a paediatric emergency medicine consultant, a paediatric neurosurgeon (specialist in surgery on the nervous system, especially the brain and spinal cord) and a paediatric oncologist (specialist in the diagnosis and treatment of cancer).

We found that there was inadequate documentation of the risks or benefits to A of performing a biopsy or resection of the tumour when it was initially detected. However, we considered that surgically it would not have been possible to carry out a full resection and that the risks of trying to obtain a biopsy in the specific circumstances were too high. We concluded that the decision not to remove the tumour when it was first detected was reasonable. Therefore, we did not uphold this part of C's complaint.

C also complained that the board's assessment of A's condition when they attended A&E was unreasonable. We found that the provisional diagnosis and management plan were reasonable, given the information available to the doctors at that time. Therefore, we did not uphold this part of C's complaint. We acknowledged that C had voiced their concerns that the appearance of A's ear related to the tumour, and noted the board had confirmed learning in terms of listening to parents' concerns.

Finally, C complained that there was an unreasonable delay in the board diagnosing A's condition. We took into account a number of factors including the fact that A's condition developed around the start of the COVID-19 pandemic, when services were severely restricted and face-to-face meetings were prevented from taking place. We found a number of shortcomings in A's care and treatment: insufficient record-keeping regarding the risks/benefits of resection or biopsy, failure to communicate clearly with A's family, the disputed position about whether it was reasonable to adopt a clear working diagnosis of schwannoma, the lack of opportunity of a second opinion, the delay in appointing the neurology referral, and a delay in writing to the GP following the initial multi-disciplinary team meeting. We considered that, taken together, these shortcomings were sufficient to have led to a delay in reaching an accurate diagnosis and upheld this part of C's complaint. Although the complaint was upheld, we acknowledged the advice from each specialism that earlier diagnosis would not have led to a different outcome.

Recommendations

What we asked the organisation to do in this case:

• Apologise to C for the failings identified. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.

What we said should change to put things right in future:

• Where treatment decisions are being made at multi-disciplinary meetings, there should be adequate documentation of consideration of the risks/benefits. There should also be evidence of discussion with family members in relation to diagnosis and management plan, where applicable. Where a patient appears to have a condition which is extremely rare, the patient records should reflect the differential diagnosis.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.

Summary

C raised complaints about the nursing and medical care their parent (A) received whilst in hospital. English was not A's first language and C also raised complaints about the board's communication with A and their family and whether appropriate follow-up care was provided by the board following C's discharge.

The board had accepted that A's nursing care fell below a reasonable standard in several areas, including the standard of record-keeping, the failure to discuss A's personal care with their family, and the assumptions that were subsequently made about A's preferences in relation to this. The board provided us with the nursing action plan they had developed following C's complaint. We took independent advice from a clinical nurse lead and a consultant geriatrician (specialist in medicine of the elderly). We found that the board's actions and action plan had been reasonable overall but there were some areas where the action plan could be improved. We upheld this part of C's complaint.

Similarly, the board accepted that the standard of communication with A and their family fell below a reasonable standard and had apologised for this. We found that the board's verbal and written communication could have been significantly improved, including their record-keeping. While the majority of issues were addressed by the action plan, there were some specific issues where staff could receive further feedback. We upheld this part of C's complaint.

C had been specifically concerned about modifications to A's medication and monitoring and treatment of A's feet. We found that the board's actions in relation to these had been reasonable and that A's medical care had been, overall, reasonable. We did not uphold this part of C's complaint.

Finally, the board had acknowledged their management of A's discharge and the communications associated with it, fell below a reasonable standard and had taken action with the aim of preventing any recurrence of this. We found that the actions proposed by the board largely addressed the issues involved. Therefore, we upheld this part of C's complaint and made only one further recommendation.

Recommendations

What we asked the organisation to do in this case:

• Apologise to A's family, via C, that they failed to communicate appropriately with A and their family during A's admission, that they failed to provide A with a reasonable standard of nursing care whilst in hospital and for the failure to respond fully to all the issues raised in their complaint. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.

What we said should change to put things right in future:

• Ward nursing staff communicate with patients and families appropriately, in line with the following sections of the NMC code: Prioritise people, Practice effectively, Preserve safety, Promote professionalism and trust. Keep clear and accurate records relevant to your practice.
• Ward nursing staff are aware of the need to properly document patients' foot care as detailed in the The Activities of Daily Living Assessment and reinforced in the NHS Education for Scotland online module for CPR for feet.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.

Summary

C complained about the care and treatment provided to their late spouse (A). A was suffering from facial pain and numbness and underwent an MRI scan. The MRI reported a benign slow growing tumour at the base of A's skull which can usually be managed with pain killers or sometimes stereotactic radiosurgery (SRS, a high dose of radiotherapy to a small area) is considered. Shortly after, A's local health board referred A to Lothian NHS Board for treatment. A attended a telephone consultation with a neurosurgery consultant (specialist in surgery on the nervous system, especially the brain and spinal cord). A was not considered to have a diagnosis of cancer given the findings of the MRI scan and was referred on a routine basis for consideration of SRS treatment.

A's case was subsequently reviewed at a multidisciplinary team meeting by clinicians at Lothian NHS board. It was identified from a review of the MRI report received from A's local health board, that there were other not previously identified lesions in A's brain, which were in keeping with metastases (cancer that has spread from other areas of the body). A was referred on an urgent basis to their local health board for further investigations including an MRI scan and CT scan. A was diagnosed with cancer and died shortly after.

We took independent advice from a consultant neurosurgeon. We found that the MRI report did not show any sinister findings which required urgent intervention and that the board took appropriate action. However, the review of the MRI at the subsequent multidisciplinary team meeting identified metastatic lesions. We considered that the review of the MRI took place within a reasonable timeframe.

We took additional advice from a consultant radiologist (specialist in diagnosing and treating disease and injury through the use of medical imaging techniques such as x-rays and other scans) about the findings of the MRI performed by A's local board. We found that the report had not detected tiny abnormalities which, if identified at the time, would have raised the suspicion of metastases and led to earlier investigation to look for the source of the primary tumour elsewhere in the body. However, we considered that the undetected findings were subtle and likely to have been missed by a number of radiologists. Therefore, the MRI report findings were of a reasonable standard.

We considered that the board had provided A with reasonable care and treatment on receipt of the referral from A's local board. Therefore, we did not uphold C's complaint.

We provided some feedback to the board with respect to the importance of acknowledging and responding to concerns raised by GPs about a patient's symptoms, particularly pain.

Summary

C complained on behalf of their spouse (A) about the care and treatment they received from the board. A was reviewed by the vascular surgery service (specialists in the treatment of diseases affecting the vascular system including diseases of the arteries, veins and lymphatic vessels) after sustaining an injury to one of their fingers. The injury initially caused some infection which progressed to gangrene (a serious condition where a loss of blood supply causes body tissue to die). A's finger was amputated but the wound did not heal and deteriorated further, leading to the amputation of A's hand. C raised concerns about the timeliness of A's initial finger amputation and that had this been done before the infection progressed, this would have avoided the need for full amputation of A's hand.

We took independent advice from a vascular surgeon. We found that the decision to admit A to hospital and treat with intravenous antibiotics was timely and appropriate. There was evidence of regular review and high quality multi-disciplinary working. We also found that the finger amputation was performed in a timely manner and that there were no published guidelines that were not followed. We considered there was no indication that performing the finger amputation earlier would have prevented the need for hand amputation. Therefore, we did not uphold C's complaint.

Summary

C attended A&E following problems they had had with their elbow. Their doctor had advised them to go to A&E if it worsened. C complained that they were not properly triaged as they were not triaged in a private area and their pain score was not noted.

We took independent advice from a nurse. We found that the triage process had not been appropriate. The board had also accepted this and put in place measures to improve the triage process. Therefore, we upheld C's complaint but did not make any recommendations in light of the actions already taken by the board.

Summary

C complained about the care and treatment their spouse (A) received from the practice. Following a routine smear test, A was advised to see a gynaecologist (specialist in the female reproductive system) as soon as possible and they attended a private appointment the same day. Investigations confirmed A had stage four endometriosis (a severe case of tissue similar to that found in the uterus growing outside of the uterus). The private gynaecologist advised A that they should ask their GP to refer them to the Endometriosis Speciality Clinic.

C complained that there was an unreasonable delay to A's referral for a specialist review. They noted that, when a referral was issued, it was sent to the local gynaecology department, rather than the endometriosis specialists.

We took independent advice from a GP. We found that an urgent gynaecology referral was created promptly following the smear test. We noted that the NHS appointment was cancelled by A while they pursued private investigations. Following a telephone consultation between A and the practice, during which they discussed the findings of the investigations and the recommendation that they be referred to the Endometriosis Speciality Clinic, we found there was an unreasonable delay in the practice sending a referral back to gynaecology. We noted the referral was not marked as urgent and A later had to ask for this to be prioritised.

We found that A was appropriately referred to local gynaecology services but we were concerned by the communication around their desired referral to the Endometriosis Specialty Clinic. There was a lack of clarity regarding what referral had been made, and why. Therefore, we upheld this part C's complaint.

C also complained about the practice's handling of A's complaint. We found that there were delays in the handling of A's complaint and that communication with A regarding the complaints procedure was lacking. We also found that the complaint response did not address some of the key aspects of A's complaint. Therefore, we upheld this part of C's complaint.

Recommendations

What we asked the organisation to do in this case:

• Apologise to C and A for the issues highlighted in this decision. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.

What we said should change to put things right in future:

• The practice should reflect on A's experience of merging private and NHS care with a view to identifying any ways that communication and onward referral could have been better managed.
• The practice should review their procedure for processing and authorising referrals to ensure that referrals are tracked right through to the point where they are sent.
• The practice should take steps to ensure all staff, including temporary or locum staff, are trained to understand and operate the referral system so that they can identify any potential delays to a referral being issued.

In relation to complaints handling, we recommended:

• The practice should review their complaints handling procedure and make sure that it is in line with the NHS Model Complaints Handling Procedure.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.