List of questions and points raised by the families of children treated on the haemato-oncology wards at Queen Elizabeth University Hospital and Royal Hospital for Children with the Cabinet Secretary for Health and Sport. These responses were issued to families on 30th October 2019.
Response from NHS Greater Glasgow and Clyde
Following meetings parents had with the Cabinet Secretary for Health and Sport about infection issues in the Queen Elizabeth University Hospital (QEUH) and Royal Hospital for Children (RHC), a number of questions have been posed, and NHS Greater Glasgow and Clyde (NHSGGC) welcomes the opportunity to answer these fully and transparently.
The remainder of this document will address each individual question posed to us in detail. Before we do so, we wish to be clear that the safety and wellbeing of our patients and their families has, and remains, our key priority, and we are very sorry that some of those in our care have had worries about the hospital environment, at what is an already difficult time.
If, as a result of the points being addressed, any individuals have additional questions specific to their child’s care and treatment, they are welcome to contact Jennifer Haynes in the Board’s Headquarters, who will ensure their concerns are addressed. Jennifer’s contact details are: Jennifer.Haynes@ggc.scot.nhs.uk or call: 0141 201 4616
The Cabinet Secretary for Health and Sport has also appointed Professor Craig White, Divisional Clinical Lead from the Scottish Government to lead and direct the work required to ensure that the voices of the families affected are heard and that the information they have asked for and entitled to receive is provided as a matter of priority. Professor White can be contacted at: Craig.White@gov.scot or call: 0131 244 5665
The families raised the following specific points:
- Environment questions
- Treatment questions
- Communication questions
- Issues raised that will potentially fall within the remit of the Public Inquiry or are within the remit of the Independent Review.
Environmental questions: 1-30
1 – Is the ventilation and water system currently safe?
Yes, and we would seek to reassure all our patients and their families of this.
Ventilation
With regards to the ventilation, there was a concern regarding the number of air changes and the air pressure within rooms where patients who were immunocompromised (which can happen as a result of cancer treatment and other treatment) were being cared for.
An upgrade was carried out in four paediatric Bone Marrow Transplant isolation rooms in 2015. Ward 6A currently has portable HEPA filters (High Efficiency Particulate Air – a type of high quality air filter) in all patient rooms and the corridor, providing additional and ongoing air cleaning. We have not identified any link between infections and ventilation.
Our priority is patient safety and we are investing £2 million to upgrade the ventilation system in Wards 2A and B to provide optimal, state of the art facilities for all our young haematooncology patients. This is to ensure we are taking every possible measure to reduce the likelihood of infection for this group of patients, who have an increased risk due to their treatments. We very much hope this will reassure the patients and the families in our care how seriously we are taking these issues.
Water
When the hospital first opened in 2015, there was no indication that there was a problem with the water in the RHC. We later had a spike in infections in 2018 (in Ward 2A) and on testing the environment and water, we found organisms which can potentially cause infection in the water supply.
To address this, we put extensive measures in place, including the installation of a water treatment system, as well as filters on water outlets. The water was then reassessed by an independent authorising engineer, who described it as ‘wholesome’.
The Public Water Supplies (Scotland) Regulations 2014 outline in legislation the requirements that are to be met for public water supplies to be regarded as ‘wholesome’. This means the water in both the RHC and QEUH is safe.
2 – Is the hospital a safe place for the children – as the families are too scared to take them in for fear of infection and want to keep them at home?
Yes, we can reassure both patients and parents that the hospital is safe, and we are sorry for the concern caused. Whilst we continue to investigate the issues and take action, every precaution has been put in place to ensure we care for our patients safely and fully.
Patient safety is the main priority for our organisation, and this is regulated and monitored in a number of ways, from individual clinical specialty and ward meetings, right up to formal committees of the Board.
We closely monitor clinical outcomes (which are measurable changes in health as a result of care given), and complete tests of the environment, including sampling of air and water tests, as well as wider water quality analysis throughout the site. In addition, doctors, nurses and estates staff undertake regular inspections of the environment for monitoring purposes, and from this, any issues are identified and addressed.
We are very sorry that families have been scared about the risk of infection, and we are committed to ensure that our staff provide all necessary supporting information and opportunity for discussion to anyone experiencing concerns about safety, or fears for their children.
3 – Can reassurance be provided that all the clinical environment is safe?
As with the above question, yes, we can reassure parents that the hospital is safe, and we have taken every measure to ensure that each patient is cared for in the best and safest way.
4 – There needs to be a check to ensure that the water from the showers drains away properly and doesn’t leak back into the rooms
We are sorry this has caused concern, as the shower floors were designed so that water drains away appropriately. There are no problems with Ward 6A showers. If there ever was an issue with an individual shower (which was not a design issue), then this would be immediately reported to estates colleagues and the drainage issue would be fixed.
As part of the work underway in Ward 2A, we will be doing a refit of the en-suite bathrooms including floor and wall coverings, to ensure that this is not a subject of concern going forward. The work to refit the en-suite facilities will include a revised detail and new materials which should reduce the need for the same level of regular repair, and minimise disruption to day-to-day ward operations.
5 – A copy of the HPS water contamination report should be shared with the families.
This is available online via the the following link:
If any patient or family member would like us to send them a paper copy of this, we would be happy to do so (please contact Jennifer Haynes on 0141 201 4616 or Jennifer.Haynes@ggc.scot.nhs.uk
6 – There needs to be a complete holistic look into the environment in the wards to ensure they are clean and safe.
We agree with this comment, and we would seek to assure families that a complete review of the ward environment involving infection prevention and control staff, senior ward charge nurses and estates and facilities staff takes place every week to monitor cleanliness and the general estates environment. If any issues are identified, then these are quickly remedied.
In addition to the above described weekly walk round, infection prevention and control colleagues, along with estates staff, are on the ward regularly to ensure vigilance and ongoing review the environment. Any issues raised are immediately resolved between the nursing and estates and facilities teams.
7 – Why are the remediation works to the wards taking so long and why are there problems in the decant wards? Are the works so far just a sticking plaster?
This is a major piece of work currently underway in Wards 2A and 2B. There was extensive planning, design and procurement work undertaken in order to commence this work, which began in April 2019, in order to ensure we were creating the right conditions for the physical work to start. As is normal, there was a lead in time before the physical work started, which it did in October 2019.
There are a number of significant technical challenges to remove the existing ventilation systems and install the enhanced system. Whilst we appreciate the concern about the time taken, these are major works, and it is important we ensure the work is carried out to a high standard. At the moment, we would anticipate this work to be complete by March 2020, which given the level of work, is a reasonable and realistic timeframe.
All works being undertaken are being done as a preventative measure to minimise the risk of infection, and to ensure absolute vigilance in our approach to the prevention and control of infection.
8 – The works in ward 6A need to be investigated with details then provided on progress.
In Ward 6A we have completed a number of actions to improve environmental controls within the ward, including the use of mobile HEPA filters (see response to Question 1) and the imminent installation of fixed HEPA filters in the en-suite areas. We have also increased the cleaning and maintenance of the chilled beams, which regulate the daily air temperature within the rooms, and have committed to a cleaning programme every six weeks. This is significantly in excess of the annual cleaning regime recommended by the manufacturer, and we have put this in place to be extra thorough.
The Chief Nurse and General Manager for Hospital Paediatrics regularly visit parents and patients within the ward, and would be pleased to answer any questions. We have also set up a closed Facebook page to ensure that the families of other haemato-oncology patients are also updated. If there are any other ways that families would find it helpful for us to communicate with them, we would welcome any suggestions that they would find beneficial.
9 – The extent of the works and the length of time until they are completed in wards 2A and 2B needs to be checked thoroughly with all details provided.
Please see our response to Question 7 and 8.
10 – Why are the rooms not cleaned properly so the families have to clean the rooms themselves and have to bring in their own bedding?
No families should ever have to clean hospital rooms, nor bring in their own bedding, and we are therefore extremely sorry where this has happened.
Sometimes family members may want to do activities, such as clean the hospital room, but this should only be if they wish to do, and absolutely not because they feel they have to.
Ward 6A has its own domestic staff and a domestic supervisor to ensure it is kept clean. There is a daily meeting between clinical and domestic staff to monitor cleaning levels. The aim is to ensure that cleaning takes place frequently and to a high standard, and we would encourage any families concerned about this to speak to the nurse in charge of their child’s care.
No patient is asked or expected to bring in their own bedding, however, if a child or young person wishes to bring in their own bedding, then we will support this. This is to help make the bedroom child-friendly and personal to the patient, in keeping with person-centred care and what matters to children.
Parents who sleep over are also provided with a bed and bedding. If this is a concern that individual parents have, we would encourage them to get in touch with us so we can make further enquiries, as this is not an issue they should have to contend with.
11 – Why are there so few facilities on ward 6A, including the facility to make tea and coffee, warm up food in a microwave, play area for the children, space for the parents to talk and discuss very difficult issues? In addition, the available food is poor and expensive on site which compounds the problems.
When a decision was made to decant Wards 2A and 2B in September 2018, an assessment was made at that time about the best clinical option that would see young patients remain on site with access to paediatric intensive care and specialist services. This recognised that there would be compromise in terms of social spaces for children, families and staff.
The short term solution was for parents to use either the kitchen facilities (including microwave and kettle) in the RHC or the microwaves within the QEUH.
Both the play assistant and the Teenage Cancer Trust Activities Co-ordinator are based in Ward 6A and arrange individual and group activities for the patients. They also ensure that the children have age-appropriate toys.
As this is an issue of ongoing concern for families, we are currently creating some parent and child facilities in the ward, including a playroom and a parents’ kitchen / social space. We would welcome any ideas patients or parents may have that they would find helpful in this regard.
12 – Are there enough cleaners on the wards?
Yes, there are sufficient numbers of cleaners, and if there are any gaps (for example, due to sickness absence), then this is immediately managed to ensure appropriate cover. Ward 6A has its own domestic staff and a domestic supervisor to ensure standards of cleanliness are maintained. There is a daily meeting between clinical and domestic staff to monitor cleaning levels.
As described previously in this document, a complete review of the ward environment, involving infection prevention and control staff, senior ward charge nurses, the domestic services manager and estates and facilities staff, takes place every week to monitor cleanliness and the general estates environment. If any issues are identified, then there are quickly remedied.
13 – Why were parents told that ward 6A would have a play room for children when it did not?
We are sorry that parents were told that Ward 6A would have a play room, when it did not, as we appreciate that this would have had a negative impact on experience.
We set up a play space and this was approved by infection prevention and control colleagues, however, when the incident occurred, it was agreed that this should be removed.
Both the play assistant and the Teenage Cancer Trust Activities Co-ordinator are based in Ward 6A and arrange individual and group activities for the patients. They also ensure that the children have age-appropriate toys.
As this is an issue of ongoing concern for families, we are creating some parent and child facilities in Ward 6A, including a playroom and parent space with kitchen facilities. We would anticipate that to be ready in early November 2019.
14 – There is a lack of room for fold down beds for parents, the blinds don’t work, the TVs also don’t work. The lack of natural light in particular effects the children when they do go outside.
We are sorry that these issues have impacted negatively on care experience, particularly as we recognise that patients and their families spend a great deal of time in their rooms. These issues relate to previous concerns raised about Ward 2A and 2B, which is undergoing an upgrade, and issues with the TVs and blinds will be addressed as part of this. This will be completed for the ward reopening in March 2020. We are committed to take action whenever we receive feedback about anything that impacts negatively on care experiences, and encourage anyone with any concerns or suggestions for improvement in this area to make these known to staff.
15 – Why did the Board not consider all these vital issues, relating to the lack of facilities when decanting the patients – in particular did they consider the effects on the mental health of the patients and their families?
When a decision was made to decant Wards 2A and 2B in September 2018, our absolute priority was where the best and safest place was to deliver care to our patients. We are sorry that patients and families have been worried about this, as we would have been keen to allay their concerns.
At the time of the decision, an assessment was made about the best option that would see young patients remain on site with access to paediatric intensive care and specialist services.
This recognised that there would be compromise in terms of social spaces for children, families and staff, but that this was necessary in order to be able to deliver the best care. We are sorry that we did not explain this as well as we could have to families.
All of these issues were considered at the time, but we hope we have explained that patient safety was of the highest clinical priority, as it is now.
The new family room will have a ‘What matters to me’ board that families can use, which we hope will act as a good communication tool in ensuring our staff know what is important to families.
16 – Why aren’t there enough electrical plugs in the rooms for all the medical equipment?
Our staff have advised the Director of Estates and Facilities that there are enough electrical plugs with rooms for all the medical equipment that is needed to provide safe, effective and person-centred care. More electrical plugs can be fitted if these are required. We would appreciate any questions or suggestions for improvements that can be made to ensure that concerns about the number of electrical plugs are addressed.
17 – Why don’t the batteries work in the mobile drip stands?
In order to keep batteries fully charged we recommend that they are connected to the electrical supply when they are not mobile or being used. We expect this to be monitored by staff so that the batteries do not run out. We also expect that any concerns about the functioning of batteries to be reported so that they can be replaced, and encourage anyone with any concern at any time about battery performance to raise this with staff in order that action can be taken in response.
18 – Why do the trolleys have defective wheels?
It is not acceptable for any equipment involved in the provision of care to be defective. We expect any such defects to be reported in order that these can be repaired. If any patient or family member has any concern about whether trolley wheels (or any piece of equipment) is defective, please report this to a member of staff so that action can be taken in response to this.
All equipment defects or failures, if reported, are repaired through routine maintenance. We are sorry for the concern that has been caused by any defects in equipment that have been noted as not having been repaired.
19 – Have the Board considered the practical difficulties in terms of patients using safe toilet facilities, without contaminated water, given the difficulties in moving with drip stands, etc?
We think this question may relate to Wards 2A and 2B prior to the move when we put in place temporary measures whilst we dealt with investigations into water safety. Wards 2A and 2B are currently undergoing a full refit prior to reopening in April 2020. The toilet, sinks and showers within Ward 6A had filters added to the water outlets as a precautionary measure to be sure we were minimising the risk of infection wherever possible.
As previously described, patient safety is our priority, and has been our primary consideration throughout all of this.
20 – How can the water be usable now in ward 2A/2B given that there are still restrictions in the floors directly above and below?
No patients are currently in Wards 2A and 2B.
The water in the hospital is safe to drink. Our on-site water plant ensures all water coming into the hospital has a low dose of chlorine dioxide, which keeps it clean and safe. In addition, any patient cared for high risk areas have point of use water filters in place as an extra precaution.
The safety of the water was then confirmed to be safe by the external Authorising Engineer, a specialist engineer who acts, and is employed, independently of NHS Greater Glasgow and Clyde. The Authorising Engineer has rated the water supply as ‘wholesome’, meaning it is safe.
We are sorry for the concerns that have been caused. Signs at the sinks within the single bed rooms advise that the sinks are for handwashing only. This forms part of our infection prevention and control standards. Patients and their families are discouraged from drinking water in the rooms as these sinks should be dedicated to handwashing only.
If any patient or family member has any concerns about the use of water, they should speak to the nurse in charge.
21 – What happens next if the QEUH campus is not safe and what is the backup plan?
The QEUH campus is safe. We would like to assure all our patients and their relatives that the hospitals on this site are safe, and that we strive to deliver safe care at all times.
We continually monitor and test to ensure the safety and integrity of the water and ventilation systems.
22 – What if the water system is found to be unsafe – is a plan B being considered at the moment?
As previously described, the water in the RHC and QEUH is safe. This has been confirmed by the Authorising Engineer, a specialist engineer who acts, and is employed, independently of NHS Greater Glasgow and Clyde. We will always consider all options and resilience plans, but we hope we have reassured that the position is that there is no issue with the water. Please see our response to Question 20.
23 – Is the QEUH campus itself safe?
Yes. Please see our response to Question 21.
24 – Is the overall water supply across the QEUH campus safe – in particular, McDonald House and the local residents use the same water supply so do they have the same problems?
The domestic water supply to the local population and to Ronald McDonald House is the responsibility of Scottish Water.
The water supply to the hospitals is safe – please see our response to Question 20.
25 – The Healthcare Improvement Scotland HEI inspection in March and 2018 didn’t go to the oncology wards or ward 6 – what was the reason?
When Healthcare Improvement Scotland undertake an independent HEI inspection, this is part of their role. They will visit a number of wards and areas, but not necessarily all wards within a hospital site. During an inspection, they will then carry out a range of checks to ensure hospitals are meeting national standards, guidance and best practice. Healthcare Improvement Scotland have been asked by Professor White from the Scottish Government to provide details on their process for deciding which wards to visit.
More information about Healthcare Improvement Scotland inspections.
26 – The families want to liaise directly with Healthcare Improvement Scotland on these issues.
Professor White from the Scottish Government will provide details of a named contact at Healthcare Improvement Scotland for any families who have further questions on their decisions and approach.
27 – Why is the day care room at the other end of the ward – which is in itself an infection risk?
When considering the decant to Ward 6A, infection prevention and control experts, with clinical teams and estates staff, agreed that the best area for the day care waiting room would be the former adults’ day room, which would maintain the waiting area within the day care area. Other options were examined, but this was considered the safest and best choice due to the practicalities and available options, in a way that does not elevate the risk of infection in an unacceptable way. Putting the day care elsewhere in the ward would have meant no proper reception area for the families.
28 – When specifically were the water filters put into the theatres?
The filters were installed in the theatres in June 2019 as a preventative control measure to make sure that the full patient pathway had sinks with filters.
Before June 2019, point of use filters (i.e. filters on water outlets) were not installed in theatres on the advice of infection prevention and control colleagues, because patients in theatre were not in direct contact with water.
As part of the current Incident Management Team investigation in June 2019, the decision was taken to install point of use filters as an extra precaution at every stage along the patients’ clinical pathway within the RHC, including the theatres.
29 – Is the cladding on the buildings where wards 2A/2B and ward 6A are located safe?
Yes. All cladding meets current safety standards, and is therefore safe.
30 – Why was one of the kitchens on ward 6A shut recently – it was suggested this was down to fungus being found?
This particular staff kitchen was shut because a leak (not fungus) was noticed within the staff kitchen on 27th September 2019. The leak was as result of a faulty tap connector on a recently fitted tap. The leak has been repaired, and the kitchen is now in use again.
Treatment questions: 31-50
31 – Are there sufficient infection prevention and control prevention measures in place?
Yes. NHSGGC have an infection prevention and control team, who provide strategic coordination and direction to ensure our programme of work reflects the National Infection prevention and control standards and requirements. We also have local infection prevention and control teams assigned to each sector of the Health Board, to provide local support, guidance, advice and action. For more information, please visit:
The current incident with Ward 6A is being investigated by an Incident Management Team (IMT), which, as described earlier, is a team of experts, including infection prevention and control nurses and doctors, clinical staff, estates and facilities teams and Health Protection Scotland, who are national experts in this field. One of the responsibilities of an IMT is to confirm that all infection prevention and control measures are being applied effectively and are sufficient. This has been closely scrutinised, and the IMT continues to meet regularly.
32 – Are children getting drugs they don’t need?
In light of the current situation with infections, it was recommended by the IMT that prophylaxis (preventative treatment) against infections was considered. There are many scenarios when children and adults are given prophylactic treatment.
If any individual patients or parents have concerns about medications, we would encourage them to speak to the Consultant in charge of their care in the first instance.
33 – An explanation of the outbreak monitoring process, and the involvement of HPS should be provided to the families.
Outbreak monitoring is the ongoing assessment of results of tests or changes we make to stop new infections from happening.
As described earlier (see response to Question 31), the current incident is being investigated by an IMT. HPS representatives are members of the IMT, and attend all IMT meetings. In addition they provide expert advice and support.
NHSGGC has published information on its website on this national process: Infection Prevention and Control
This sets out that the responsibilities of an IMT are to:
- Develop theories and suggestions for testing as to which cross-transmission pathways and clinical procedures may be involved in causing the infections, to try and find the cause.
- Determine whether there are any additional cases that need to be considered, and what control measures (i.e. actions to help control the likelihood of risk) may be necessary.
- Confirm that all incident control measures are being applied effectively and are sufficient.
34 – Is there an infection risk because of the smell from the nearby sewers in the QEUH campus? In particular there is a smell in the isolation ward and reassurance is sought that they are safe.
We have no evidence to say that the smell being referred to is likely to be a safety risk. At the planning stages of the new QEUH and RHC hospitals, which are on the same site as a previous hospital, an environmental impact assessment was carried out. This included a review of the air quality and considered whether there would be any detriment associated with being located next to a sewage plant. No clinical or microbiological issue was identified.
The Independent Review team have also looked into this issue as part of their independent review of the hospitals. They have stated:
Following the inquiry’s formal Call for Evidence in June, members of the public asked for the facility to be taken into consideration by the investigation team. The site is a concern for members of the public because of the quite potent smell which is noticeable at the QEUH.
A number of hospitals have been sited close to major wastewater treatment sites across Scotland over the years. This includes the former Southern General Hospital on which the QEUH now sits. The Shieldhall wastewater treatment site dates back to 1901.
Dr Montgomery said: “Clearly there are concerns relating to its proximity to the QEUH. If we are to fully address public confidence issues we would be remiss not to explore any health links associated with the site as part of our review. Smell alone will not cause an infection risk but we felt that we should look into this and any associated issues. To date, nothing of concern has been uncovered.”
35 – Why were patients given medication, for infections, which is only supposed to be used for a week?
Some medication is used to reduce the risk of developing certain types of infection. In light of the current situation with infections, and as described in response to Question 32, it was recommended by the IMT that medication to reduce the risk of infection be considered. We are sorry that questions about the use of such medicines, including how long this was recommended for, were not adequately addressed for some families.
This is something that continues to be monitored. If any patient or family member has any questions or concerns about any aspect of clinical care/use of medicines, suggestions to improve the current approaches to the provision of information, or unanswered questions about this, these should be directed to the Consultant in charge of the care being provided. The IMT continues to review the position.
36 – Why were patients given prophylaxis without consent of the parents?
We expect all families to be informed and fully involved in discussions regarding all medication and any treatment changes. The named Consultant is responsible for ensuring ongoing discussion with the parents about the care of their child, and we are committed to reviewing the concerns of any family where they felt they were not involved in discussions or decisions about their child’s care. As described in previous responses, the use of medication to reduce the risk of infection is not unusual, and not all infections are preventable, but as with any medication, it should be clear why it is being prescribed.
We welcome the opportunity to look into this for any parent who has concerns about how this essential element of care planning has been delivered.
37 – Why if all the infection prevention and control measures are in place are the patients still being given prophylaxis?
Please see our response to Questions 32 and 35.
38 – Are the clinicians all able to access the same, correct, information?
Yes. Clinicians are active participants in the IMT, along with colleagues from Health Protection Scotland, where the data is presented and assessed.
Because not all clinicians can attend all meetings, as they are in clinics or looking after patients, those who attend feed back to those not present. The Chief Nurse and General Manager provide verbal updates to the clinical teams following IMT meetings. Any actions or matters arising are passed over to each new shift via ward safety briefs (which are verbal meetings). Special meetings with all clinicians were organised to ensure all had a chance to discuss progress.
39 – Why are the staff washing their hands in contaminated water?
As described above, the water quality has been assessed and is clean and safe. There has been extensive work and action undertaken to fix the issues identified with the water; the water has been through a general filtration process, water treatment and a point of use filter at the sink. As noted in response to previous questions, the water has been deemed as ‘wholesome’ by an independent expert. It is therefore not the case that staff are washing their hands in contaminated water.
40 – Why are families being told that their child has not got an infection only for them to be subsequently treated for the infection?
There are occasions when families would be informed that their child has not got an infection and would then receive treatment. This could be if information became available to suggest the presence of an infection at a later stage, or if a decision was made to commence medication to reduce the risk of infection developing. As referenced earlier, the IMT also recommended that prophylaxis against infections was considered (see Question 32).
Any parents who have unresolved concerns about treatment, the reasons for this and how this relates to information they have been given should raise this with the Consultant responsible for the provision of care.
41 – Do families have sufficient access to relevant medical records – in particular as diagnosis has been changed or even denied on a few occasions?
We will support any family who wishes to discuss access to relevant medical records and, in cases where there are questions about diagnosis, take all necessary steps to discuss and respond to any questions about this. This should be raised with the Consultant in charge of care in the first instance.
42 – There needs to be external scrutiny of the Board.
There are currently a number of internal and external reviews of the QEUH and RHC ongoing. As well as our own internal reviews, there is the Independent Review commissioned by the Cabinet Secretary of Health and Sport (more details of which can be found at: Queenelizabeth hospital review, an investigation by the Health and Safety Executive and the recently announced Public Inquiry. We are fully contributing to all of these reviews.
43 – What are the long term effects on health given the delay in treatment caused by the infections?
All patients are individual, and going through different illnesses and treatment. For this reason, this question needs to be answered on a case by case basis with the relevant Consultant in charge. We are happy to help facilitate this for any parent with concerns about delays in treatment (or any other issue regarding the care provided).
44 – Why were toys, particularly those from a local charity not allowed on the ward and who made the decision?
Sometimes soft toys are not allowed on the ward as they can be more difficult to keep clean. The play service provides toys for children and staff are committed to ensuring that the provision of appropriate toys is supported and that conversations take place in a way that addresses any concerns regarding infection, while taking account of the importance of this as a part of an individual child’s plan of care.
45 – Where will the children go if the wards are not safe? For example are the only other suitable hospitals in Newcastle, Manchester and London? (for bone marrow treatment.)
There are no concerns for Bone Marrow Transplant (BMT) patients within NHSGGC. The BMT patients are currently in a dedicated BMT unit, and have not been part of this incident. They continue to receive their care at the RHC, QEUH and Beatson West of Scotland Cancer Centre.
46 – Have the Board considered issues such as patients having to travel to different wards to use the toilets because of the risk posed by contaminated water?
It is not necessary for patients to visit other wards to use the toilets. We would welcome further detail on any situation if this has been advised, so that we can ensure that this is reviewed, and action taken to make sure that accurate information is being provided.
47 – Has the Board considered the mental health effects on the families and in particular the children, who through a lack of facilities are in effect institutionalised.
Yes. We are committed to doing everything possible to ensuring that these issues are considered as part of care planning and co-ordination. Clinical psychologists are available to any families who has concerns about the impact of the care environment on the psychological health and wellbeing of children and their families.
48 – Why is there an issue with patients getting chemotherapy overnight? Are the correct clear details being provided?
There are no restrictions on patients getting chemotherapy overnight. Concerns about this issue should be discussed with the Consultant in charge of care.
49 – Where do the patients go if they have a spike in temperature?
For patients who are no longer staying in the ward, from Monday to Friday day time hours, parents should call the day care unit and patients would be brought there. Out of hours access would be via the Emergency Department, or parents can call NHS 24 for advice.
Parents can also call the ward their child was in for advice at any time, who in turn can let the Emergency Department know they are going to attend, if that is what the advice is.
50 – Is there an argument for moving the Schiehallion patients to Edinburgh and retrospectively fit Glasgow in the meantime?
High risk patients are assessed on a case by case basis. Those who are clinically assessed by the haemato-oncology consultants and infection prevention and control doctors, may be admitted to either Ward 4B in the RHC, or another centre. Other patients are safe to be cared for in Ward 6A, outpatients and day care at the RHC.
Communications questions: 51-65
51 – The families need to know exactly what is happening – as at the moment they have no details or understanding of the remedial works.
We realise how important it is to keep families informed and are committed, based on feedback, to continuously improve how we do this. The parents of all inpatients directly affected have been provided with regular verbal updates on the work underway within Ward 6A. As described earlier, we have also set up a closed Facebook page to ensure that the families of other haemato-oncology patients are also updated.
Please also see our response to Question 8 of the Environment Questions in relation to this point.
52 – Why was advice given by staff that patients were perfectly safe in terms of infection risks from the environment but then contradicted by other staff who said that the environment, and water, was not safe? This led on occasion to the position changing overnight and patients being moved at very short notice.
We are very sorry for confusion and distress caused by differences in the information that was provided or when changes in information have not been fully explained.
The hospital is safe. Since late 2018, we have put in place a number of additional preventative control measures to mitigate further the risk of infection in this vulnerable group from the environment. This has meant a number of patient moves over eighteen months. We apologise again for the inconvenience, distress and concern this will have undoubtedly caused. Patient safety is always our main priority and we remain committed to continuously improving our communication, support and provision of information to patients and families on the basis of feedback. In a situation like this, we are constantly monitoring and investigating the position. That means we regularly receive updated information and it is a changing picture.
53 – Who has the information that the wards are safe? Where does it come from and why is there so much contradiction?
We have local infection prevention and control and infection data that is collected as a matter of routine, which shows trends and highlights issues across the hospital, and in individual specialties. It has been a changing picture rather than contradictory, but we are sorry that this has caused confusion.
54 – Why are the families not being told everything about their children’s treatment, in terms of what medication is required and what might be the side effects?
It is our expectation that patients and parents are fully informed, and we apologise for all instances when this has not been patients and families experience. We are committed to reviewing and learning from all instances where this has not been the case; and to ensuring that everyone is clear on the importance of supporting discussion with the Consultant in charge of care provision. If you would like to tell us more about this, we would welcome your feedback and any questions so we can ensure you have all the information you need and want.
55 – Why are staff members told to not tell the facts and the truth of the situation?
Staff should always be truthful in their discussions with patients and families. Staff have not been told not to talk to families, and have been encouraged to share information about what they know. If they cannot answer questions, they are asked to pass these questions onto relevant colleagues, for instance senior management and infection prevention and control colleagues, in order that points of concern can be addressed.
As described earlier, the Chief Nurse and General Manager of the hospital regularly visit the ward to provide an update to families, and to give written updates, and we also have a closed Facebook page for parents to provide regular updates and answer questions.
56 – Why did families first hear in the STV news about the 6 children moving?
We make every effort to keep families informed in a timely manner, and we are therefore sorry parents found out this information from STV. We ensure that parents directly affected are informed of any press statement prior to issue, however, we are unfortunately unable to control when the media will start to report on issues that they are informed about by other sources.
57 – Why did the NHSGGC management not explain the situation and instead offered no communication – they appear to be concerned about legal action?
We have sought to prioritise the information and support needs of patients and families throughout this situation. We are sorry that there has been an appearance that concern about legal action has compromised our commitment to explain and ensure timely, sensitive and appropriate communication.
Throughout the past eighteen months we have made a number of public statements and regularly updated families on the actions taken. We are committed to continuously improving our approach to providing information, responding to questions or concerns and providing any support that may be required.
58 – Why is the Board so defensive?
We are sincerely sorry that any actions taken have been experienced as defensive. The IMT are continuing with their investigations; there are a number of areas where questions remain and where we do not yet have the full answers. It is important that when questions are asked that we do not know the answers to, that this is explained openly, supportively and sensitively.
The Chairman and Chief Executive have committed to meeting every family that wishes to do so to discuss any concerns, and they have written to all families to offer this.
59 – Why are the staff prevented from telling the truth – why do they have their hands tied?
Please see our response to Question 57.
60 – Why did the Board issue a press release stating that the water was safe to drink when the families were clearly told that it wasn’t safe to drink? Why did the Board lie?
Although the water is safe to drink, water from basins in patient rooms should not be used, as they are for handwashing only; this is advice from infection prevention and control colleagues. If this has caused any confusion, then we sincerely apologise.
As previously described, the water is safe to drink, and this has been confirmed by the Authorising Engineer, a specialist engineer who acts, and is employed, independently of NHS Greater Glasgow and Clyde.
We understand, however, that there may have been confusion because of the signs at the sinks within the single bed rooms, which advise patients that they are for hand washing use only. Patients and their families are discouraged from drinking water in the rooms as sinks are dedicated to hand washing.
As there was no parent kitchen currently in Ward 6A, we provided patients with bottled water. This was not connected to the quality of the water supply, but due to the fact that there was no facility for the parents access tap water.
61 – All the staff, including the clinical staff need to be praised for their hard work and providing fantastic care – they should not be singled out for criticism.
We greatly value our fantastic staff and completely recognise that recent events have been difficult and stressful for them.
The health and wellbeing of our staff is hugely important, and we have therefore put in place additional support for any member of staff who wishes to access it.
The senior management team of the children’s hospital regularly praise the work of the clinical and support team and ensure that they get the recognition they deserve.
62 – Why is the Board not speaking to the families and complying with the Duty of Candour Legislation?
Organisational Duty of Candour legislation has very clear and defined criteria of what needs to be considered in relation to an incident that may require activation of the procedures outlined in this legislation. Regardless of whether an issue or incident meets the criteria outlined by this legislation, all regulated healthcare professionals have a professional duty of candour and NHSGGC is committed to ensuring that our actions are always informed by the principles of openness and honesty; we understand that this is key to creating trust in situations such as those that have rightly concerned families.
We are therefore very sorry for the perception that we have not been candid, as this was absolutely not our intention and we will learn from this. We have asked Professor White from the Scottish Government to review all individual care incidents to provide us with advice on the approach that has been taken to decision-making in respect of the application of the organisational Duty of Candour legislation, reflecting our commitment to ensure that we are continuously improving the way we respond to incidents where we need to consider whether the organisational Duty of Candour applies.
63 – Reassurance was sought that the patients won’t be stuck in a ward which doesn’t provide oncology care and therefore the relevant protocols.
We can assure you that we will always care for patients in an appropriate setting. Patients will always be looked after by staff who are specifically trained for work with children who have cancer. They may have to be cared for in another ward for a number of reasons, but in that ward they will still receive specialist care by staff who are appropriately trained.
64 – A public apology is also needed from NHSGGC to clinicians and staff who have being doing their jobs very well. This would start to build trust. There needs to be real engagement with the staff as they feel vulnerable.
We are very grateful to our excellent staff and we are sorry that our views of how well staff have been doing their jobs has been doubted. We completely agree that this is essential to supporting our staff and minimising any feelings of vulnerability they might experience. We recognise this is a difficult time for staff as well as parents.
Our Chairman and Chief Executive met staff on the ward on October 2019, 8 October 2019, and 23 October 2019. Our Medical Director and Deputy Medical Director also spoke with staff on Ward 6A, as well as Ward 4B. We are working with clinical and nursing staff to address the issues raised in these meetings, and in a meeting with the Deputy Chief Medical Officer for the Scottish Government.
As described in response to Question 62, the health and wellbeing of our staff is important and we have therefore put in place additional support for any member of staff who needs it. The senior management team of the children’s hospital regularly praise the work of the clinical team, particularly the nursing staff, and ensure that they get the recognition they deserve.
65 – Why did the children get moved into an unsuitable adult ward?
Please see our responses to questions 11 and 15 within the Environment Questions, and question 65.
Children have not been moved to any area that we would regard as unsuitable. We have always endeavoured to take all necessary measures to ensure continuity of care, in the best and safest way possible.
Issues raised that will potentially fall within the remit of the Public Inquiry or are within the remit of the Independent Review: 66-70
66 – Is there a risk because the QEUH campus (including the RHC) was built next to the main sewage plant?
No. Please see our response to Question 34 within the Treatment Questions.
67 – Why were patients admitted to wards 2A and 2B after meeting minutes established that the ventilation was not fit for purpose prior to the ward opening?
Please see our response to Question 1 within the Environment Questions.
68 – Why are all the problems happening in a new hospital?
The design, commissioning, build and maintenance of the RHC and QEUH are the subject of a number of internal and external reviews to examine these issues. These reviews will provide answers to questions such as this one.
69 – Can the Terms of Reference of the Public Inquiry have child/patient experience at the heart of it?
Whilst the Terms of Reference of the Public Inquiry is not for NHSGGC to determine, we would agree that this issue should be a key feature. Professor White from the Scottish Government will liaise with officials supporting the establishment of the Public Inquiry to make them aware of this suggestion.
70 – Confirmation that a decision will be taken by the chair of the inquiry (following appointment) as to persons who will be required to attend or otherwise provide evidence to the inquiry, for example the First Minister (who was Cabinet Secretary for Health and Sport at the time of the QEUH’s construction) and former Chief Executives/senior staff.
These are matters that will be determined by the Public Inquiry in accordance with the arrangements in place for establishing processes and procedures that will support this work.
(Content first published in January 2020)