Transfer
17. Ms E says clinicians decided to transfer her sister from The Royal London Hospital (RLH) to Newham General Hospital on 8 January, before she regained consciousness following her stroke. She says it was not appropriate to move her before doctors had assessed what condition she was in, and they should have waited until she woke up.
18. The Trust admitted Mrs A to the hyperacute stroke unit at RLH for monitoring and management following her stroke on 4 January. On 8 January, the treating clinician recorded that Mrs A would be repatriated to NUH as there was a bed available for further rehabilitation. The discharge summary says the inpatient therapists had reviewed Mrs A and it was their impression she needed ongoing rehabilitation at the local stroke unit.
19. The London Stroke Model Guidance suggests says that patients should be considered for repatriation to their local stroke unit after approximately 72 hours have elapsed. This timeframe might be extended if patients are too unstable to transfer.
20. Our stroke physician adviser says the Trust’s decision to move Ms A on 8 January was appropriate and in line with the London Stroke Model. The hyper acute stroke unit at hospitals like RLH treat stroke patients in the first few days following their stroke. The unit has higher nursing and therapy ratios and is set up to provide the ‘hyper-acute’ treatment and care which is delivered in the first 48-72 hours after a stroke.
21. Mrs A was transferred after the 72-hour time window. Clinicians noted she was ‘drowsy’ but stable on 8 January, and her blood pressure had stabilised. Our stroke physician adviser says there does not appear to have been any clinical need for Mrs A to have stayed on the hyper acute Unit at RLH. Mrs A appeared safe for transfer and there are no indications the transfer adversely affected her. Our stroke physician adviser says all the care Mrs A needed from that point onwards could be managed by NUH.
22. We are sorry to hear about Ms E’s concerns about the timing of her sister’s transfer to a different hospital and appreciate it was a very worrying time. We consider the Trust acted appropriately and in line with guidance when it decided to move Mrs A, and we have seen no evidence to suggest this negatively impacted her condition.
PEG tube
23. Ms E says the Trust inserted a PEG feeding tube and incorrectly told the family it could be removed in the future. She says the clinical staff decided the NG tube was too much trouble, so they decided to place the PEG instead. She says she expressed concerns about how this could impact her sister’s recovery, but doctors told her it was best for her to have it and it could be removed later. Ms E says her sister still has the PEG in place and they have been told it would be dangerous to remove it.
24. On 5 January, the notes say Mrs A was assessed by the dietetic team and they decided to insert a nasogastric intubation (NG) tube. An NG tube is inserted through the nose into the stomach and is used to give patients who have difficulty swallowing food and medication. Mrs A had difficulty swallowing following her stroke.
25. On 9 January, the dietetic team carried out a further assessment and noted the NG tube should continue. The ward round notes from 14 January and 16 January state Mrs A kept pulling her NG tube out.
26. On 21 January, the nutrition multi-disciplinary team (MDT) noted there had been concerns raised by the speech and language therapy (SALT) team about Mrs A’s long term swallow rehabilitation. The notes say Mrs A had difficulty keeping the NG tube in place, and SALT would continue to monitor and assess Mrs A’s suitability for PEG feeding tube when she is more clinically stable. A PEG is a type of feeding tube that is inserted directly into the stomach.
27. On 27 January, the records show there was a discussion between members of Mrs A’s family and the SALT team. The SALT therapist noted Mrs A’s daughter was asking questions about swallow and communication, and they explained that both are significantly impaired. The therapist noted they also spoke about inserting a PEG and Mrs A’s daughter asked about recovery. They noted they explained they had not seen improvements so far and if any improvements are to be made, it will likely take a long time and it is not possible to predict if/ how much a patient will recover.
28. Clinicians inserted a PEG feeding tube for Mrs A on 12 February and the notes say there were no complications. The surgeon completed a consent form with Mrs A’s daughter beforehand which covered the details of the procedure and noted it was in Mrs A’s best interests to ‘facilitate better rehab’.
29. The Royal College of Physicians National Clinical Guideline for Stroke says ‘people with stroke should be considered for gastrostomy feeding if they need but are unable to tolerate nasogastric tube feeding; are unable to swallow adequate food and fluids orally by four weeks from the onset of stroke; are at high long-term risk of malnutrition’.
30. Our stroke physician adviser says the PEG tube was a considered decision and it was discussed as a team with different MDT members (e.g. speech and language, doctors and dietetics). It appears clinicians allowed an appropriate amount of time to see if Mrs A was likely to regain her swallow before making this decision. In addition, the notes say Mrs A was repeatedly pulling out her NG tube, which is potentially dangerous and is another reason to move to a PEG tube.
31. The notes show there were multiple discussions with Mrs A’s family about the PEG tube and clinicians explained the nature of the procedure with Mrs A’s family. Given this, we consider the Trust’s decision to insert a PEG feeding tube was appropriate, and in line with national guidelines and clinicians appropriately discussed this with Mrs A’s family.
PEG tube training
32. Ms E says the Trust discharged her sister on 6 March 2020 without providing the family with adequate training or information on how to manage her feed tube. She says the Trust only arranged for one hour of training for the family. She says only the qualified nurses were allowed to manage her sister’s PEG tube on the ward, and yet the Trust discharged her sister into their care when they are not qualified medics.
33. The Trust say Mrs A’s family received PEG feeding training before she was discharged, and she was kept in hospital for an extra 10 days to allow time for this training to be completed. The Trust say it is sorry if the family felt the training was not comprehensive enough and the trainers would have been happy to go through it again if they had asked questions or raised concerns during the training. It says the carers who would be caring for Mrs A when she was at home had received one week’s training and the family had the opportunity to observe medication being administered and one of Mrs A’s daughters had flushed the PEG under supervision.
34. There does not appear to be any specific guidance that sets out exactly what the PEG training should entail or how long it should be for. Our stroke physician adviser says it appears the Trust arranged for Mrs A’s family and carers to have appropriate training to manage her feed tube at home. The plan to train the family was made on 12 February 2020 and the notes show the training happened on 5 March. This was before discharge and our physician adviser says it was better to be done closer to discharge so that the information can be retained. There is nothing in the notes to say the Trust provided Mrs A’s family with any additional information about what they should do if they had further concerns following the training.
35. We can see from the notes the Trust appropriately arranged training for both Mrs A’s carers and the family before she was discharged from hospital. We are very sorry to hear that Ms E and the family did not feel this was adequate and we appreciate it would have been stressful for them. We do not have any independent evidence to say whether Ms E or other family members raised concerns or asked questions during the training, so that further clarification could have been provided at the time. From the evidence we have, we cannot say a service failure took place.
Physiotherapy
36. Ms E says the Trust failed to provide adequate physiotherapy treatment to help with her sister’s recovery and ignored the families’ concerns about this. She says the Trust did not do anything to help with her sister’s recovery whilst she was in hospital, and she only had a couple of physiotherapy sessions.
37. The notes show Mrs A had an initial physiotherapy and an occupational therapy (OT) assessment on 5 January at RLH. The occupational therapist noted they would do a functional assessment when Mrs A was stable.
38. Mrs A had a further joint OT and physiotherapy assessment after moving to the stroke unit at Newham hospital on 9 January, and she was transferred out of bed. Following this assessment, staff formulated a plan that Mrs A should sit out daily with the nurses or therapy staff.
39. Our physiotherapy adviser says the initial physiotherapy and OT assessment and plan is in line with the NICE stroke guidelines [NG128] which says: 1.7.2 Help people with acute stroke to sit out of bed, stand or walk as soon as their clinical condition permits as part of an active management programme in a specialist stroke unit.
1.7.3 If people need help to sit out of bed, stand or walk, do not offer high intensity mobilisation in the first 24 hours after symptom onset.
40. Our physiotherapy adviser says all the therapy sessions throughout Mrs A’s admission are clearly documented and reasoned. If Mrs A did not receive therapy, the reason was always noted, such as drowsiness, NG tube, scans and the patient declining input. The OT’s and physiotherapists offered different sessions such as hoisting to the chair/wheelchair, standing practice with the strand hoist, rehabilitation in the gym and the use of the MOTOmed passive trainer.
41. There is regular mention in the treating physiotherapist’s notes about Mrs A’s lack of engagement, lack of motivation, passiveness, low mood and fatigue which our physiotherapy adviser says are all contributing factors to very limited rehabilitation potential. The notes say Mrs A declined therapy input several times during her admission. On 21 February the physiotherapist noted Mrs A declined input and her active rehabilitation was limited by reduced engagement with therapy and she is unlikely to be a candidate for community follow-up with therapy goals.
42. NICE rehabilitation guidelines state: 1.1.1 People with disability after stroke should receive rehabilitation in a dedicated stroke inpatient unit 1.2.16 Offer initially at least 45 minutes of each relevant stroke rehabilitation therapy for a minimum of 5 days per week to people who have the ability to participate, and where functional goals can be achieved.
1.2.18 If people with stroke are unable to participate in 45 minutes of each rehabilitation therapy, ensure that therapy is still offered 5 days per week for a shorter time at an intensity that allows them to actively participate.
1.9.1 Provide physiotherapy for people who have weakness in their trunk or upper or lower limb, sensory disturbance or balance difficulties after stroke that have an effect on function.
1.9.2 People with movement difficulties after stroke should be treated by physiotherapists who have the relevant skills and training in the diagnosis, assessment and management of movement in people with stroke.
1.9.3 Treatment for people with movement difficulties after stroke should continue until the person is able to maintain or progress function either independently or with assistance from others (for example, rehabilitation assistants, family members, carers or fitness instructors).
1.9.4 Consider strength training for people with muscle weakness after stroke. This could include progressive strength building through increasing repetitions of body weight activities (for example, sit-to-stand repetitions), weights (for example, progressive resistance exercise), or resistance exercise on machines such as stationary cycles.
1.9.5 Encourage people to participate in physical activity after stroke.
43. Our physiotherapy adviser explains to be able to rehabilitate someone adequately, there needs to be a level of engagement and motivation from the patient. It is clearly documented in the notes that Mrs A lacked motivation and was passive throughout sessions. The treating doctors had also explained that Mrs A’s stroke was very extensive and given it involves a part of the brain causing drowsiness, it was likely to impact Mrs A’s rehabilitation potential.
44. Our physiotherapy adviser says the Trust provided appropriate physiotherapy treatment to Mrs A and followed the NICE Guidelines above when it was not limited by issues with Mrs A’s drowsiness, the NG tube and lack of nutrition. The combination of Mrs A’s lack of motivation and her level of disability from her stroke meant her rehabilitation potential and the likelihood of the therapists achieving any improvement despite best efforts were sadly extremely low.
45. Ms E also complains about how the Trust dealt with the families’ concerns regarding the level of physiotherapy input she was receiving.
46. Our physiotherapy adviser says the trust staff appropriately considered the families concerns. The notes show Mrs A’s daughter raised concerns to a physiotherapist about her mother’s therapy sessions on 27 January. This physiotherapist documented this conversation and gave clear and appropriate explanations and responses. The physiotherapist also arranged a plan to carry out a joint rehab session with Mrs A’s daughter the following day. Following the session, the physiotherapist documented the ‘patient's eldest daughter has realised through the session that her mother has been receiving daily physiotherapy and although she is not fully engaging in the task and is mostly a passive recipient mainly due to her poor cognition/attention she is benefitting’.
47. We fully recognise Ms E’s strength of feeling that the Trust could have provided more therapy to her sister to aid with her recovery. We consider the Trust acted in line with relevant guidelines and the level of possible therapy in put was sadly limited by Mrs A’s clinical condition and her lack of engagement. We can also see the therapy team had conversations with Mrs A’s family about this during her admission and appropriately addressed their concerns. We do not consider anything has gone wrong here.
Equipment
48. Ms E says the Trust failed to make correct referrals to ensure her sister had necessary incontinence products and equipment at home before discharging her from hospital and they had to source these themselves.
49. The Trust say the therapy team completed a wheelchair referral on 26 February. It says the prioritisation of referrals is solely managed by the wheelchair service, which is separate from the Trust. The Trust explain it does not supply armchairs, but the OT would usually recommend to the family the type of chair that should be sourced. It says it supplied Mrs A with a hospital bed with an appropriate mattress. The OT assessed the risks and advised against cot sides for the bed but noted the carers would continue to assess this in the community.
50. The Trust says it also supplied a full body hoist along with hoist slings and sliding sheets to manage Mrs A at home. Mrs A was also discharged with a package of care in place for carers to attend 45 hours per week. The Trust say Mrs A was fully dependant on hoist transfers when she left hospital and it feels the equipment provision, level of care package and training reflected this.
51. Subsection 1.5.18 of NICE guideline NG27 on transition between inpatient hospital settings and community or care home settings for adults with social care needs says ‘the discharge coordinator should discuss the need for any specialist equipment and support with primary health, community health, social care, and housing practitioners as soon as discharge planning starts. This includes housing adaptations. Ensure that any essential specialist equipment and support is in place at the point of discharge’.
52. On 27 February, the OT noted Mrs A’s daughter had requested a list of equipment that would be provided by the team on discharge. The OT recorded they provided the list and explained that some specialist equipment could only be provided by other services because there was a limitation of equipment provision for hospital OT’s. The plan was for the OT to continue with specialist equipment referral and the equipment would be delivered before discharge.
53. Our OT adviser says the treating occupational therapist engaged with Mrs A’s family and provided information and informed them about the limitations of what the hospital could provide. The occupational therapist made all appropriate outward referrals for specialist equipment to enable Mrs A to have access to equipment to continue her care at home in line with NG27.
54. The Trust acknowledge the nursing staff did not make a referral to the incontinence team when Mrs A was discharged from hospital, and it should have supplied Mrs A with a week’s worth of incontinence pads. It has apologised this did not happen. It says the nurse incontinence specialist has been undertaking training with the nursing team to ensure they make the correct referrals and supply enough pads.
55. NHS complaints standards say ‘an effective complaint handling system makes sure staff take a thorough, proportionate, and balanced look into the issues raised in a complaint. It gives people fair and open answers to their questions based on the facts, and takes full accountability for mistakes identified….wherever possible, staff explain why things went wrong and identify suitable ways to put things right for people. Staff give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.
56. We are sorry to hear about the stress Ms E and the family experienced at an already very difficult time. We consider the Trust made appropriate referrals for Mrs A to have the necessary equipment at home in line with the NICE guidance and provided advice about what it could not provide. We can see the Trust have acknowledged what went wrong with the provision of the incontinence products and have put measures in place to prevent it from happening again. We consider this is in line with the NHS complaints standards and is enough to remedy what went wrong.
Referrals
57. Ms E says the Trust did not make timely referrals to the community stroke team and speech therapy team after discharging her sister from hospital.
58. Community stroke teams offer therapeutic input for patients who have been discharged from hospital following a stroke. The Trust says as part of its investigation it liaised with the community neurotherapy team who advised that Mrs A was on their active caseload and the local council OT had also visited Mrs A after her discharge from hospital.
59. Our stroke physician adviser says Mrs A had prolonged and regular reviews from Speech and Language (SALT) team during her hospital admission. She also saw the physiotherapy and OT teams on a regular basis. The notes show there was sadly no improvement, even with ongoing SALT input.
60. On 18 February, the SALT team assessed Mrs A whilst one of her daughter’s was present. The therapist noted they informed Mrs A’s daughter that her mother’s language and cognition was significantly impaired, and she was still demonstrating low levels of comprehension and expression. Mrs A’s daughter was keen for her mother to receive community SALT input to help her communicate directly. The therapist recorded they explained that Mrs A would not be suitable for direct therapy due to her level of communication impairment in addition to her cognition, as Mrs A would not be able to recall practicing strategies due to her memory.
61. Our stroke physician adviser explains that in order to receive and benefit from community therapy, a patient needs to be showing signs of gains (or be expected to make gains) as rehabilitation in a patient who is unlikely to make gains is futile. The notes show this was clearly discussed with the family on multiple occasions. If Mrs A improved in the community (which was unexpected), Trust staff informed them the GP would be able to refer her to the community teams for further input.
62. We appreciate Ms E believes the Trust should have made onward referrals for her sister to receive ongoing therapy in the community. From the evidence we have considered, we consider the Trust acted appropriately and there was no indication community therapy would offer any benefit when Mrs A was discharged from hospital.
63. Whilst we do not uphold the complaint overall, we recognise how important this complaint is to Ms E and her family. We thank her for bringing her complaint to us for consideration and we hope our findings provide her and the family with some reassurance.