QUALITY ACCOUNT 2012 – 2013 Rainbows Hospice for Children and Young People Lark Rise, Loughborough, Leicestershire. LE11 2HS Tel: 01509 638000 Fax: 01509 216472 Website: www.rainbows.co.uk Registration Company in England and Wales Number: 2743297 Registered Charity Number: 1014051 Care Quality Commission Provider ID: 1-101728495 This Quality Account has been endorsed by the Hospice Board of Trustees “It is so very difficult to explain the magic of Rainbows to those who haven’t experienced it, but to feel in our hearts, to see it with our own eyes and know it from our own experience is humbling and enriching” (Parent) Photo to be inserted “To be able to hand over a child with such complex needs, knowing they will be loved and cared for is absolutely amazing. It means everything to us without Rainbows we would have a life without plans” (Parent) “An excellent and invaluable provision delivering the level of respite support required” (Parent) Our Mission Statement: This statement was developed with the help of families who use the services of the hospice and with members of staff Enriching Lives: to be here always and strive to meet the needs of children, young people and their families in our care. 2 Contents Page No. Part 1 Statement of Quality from Chief Executive Part 2 Priorities for Improvement - Priority 1 (Patient Safety) - Priority 2 (Patient Experience) - Priority 3 (Clinical Effectiveness) Statements of Assurance from the Board - Review of Services - Participation in National Audits - Research - Quality Improvement and Innovation Goals agreed with our Commissioners - What Others Say About Us - Data Quality - Information Governance Toolkit - Clinical Coding Error Rate Part 3 Review of Quality Performance Local Quality Measures - Referrals - Our Participation in Clinical Audits Quality Metrics/Quality Markers We Have Chosen to Measure - Patient Safety - Clinical Effectiveness - Patient Experience Staff Satisfaction The Board of Trustees Commitment to Quality Statements from Local Involvement Networks (LINks) 4 5 5 6 7 8 8 8 8 9 9 9 10 10 10 11 11 11 14 14 14 14 16 16 17 3 Part 1 Statement of Quality from Chief Executive It gives me great pleasure to present the first Quality Account for Rainbows Hospice for Children and Young People for 2012/13 Rainbows are an independent local charity. Children and young people with lifelimiting and life-threatening conditions come to the hospice for specialist respite stays, symptom management, palliative and end of life care. Their families are also supported and helped by Rainbows on their difficult journey. The aim of this report is to give clear information about the quality of our services, to demonstrate that our children, young people and their families can feel safe and well cared for and that all of our services are of a very high standard. We could not give such high standards of care without the hard work of our staff and volunteers and together with the Board of Trustees I would like to thank them all for their support. Rainbows are actively engaged with the NHS and other stakeholders in determining how the quality of children’s palliative care can be developed and improved in the future. As part of that commitment we are proud to host the East Midlands Children’s Palliative Care Forum. Our focus is, and always will be, our children, young people and their families we therefore actively continue to seek the views of all who access our services in order to ensure we maintain the highest standards of quality. Rainbows Board is supported by two sub committees, Clinical and Corporate Governance. The Clinical Governance Committee has a particular remit to ensure that the hospice has a culture of continuous improvement. Two of the eleven items specifically mentioned in the committees’ purpose are: To ensure that user and carer experience and involvement is taken into account and is fed back to the Board. To provide assurance to the Board of Trustees that clinical care is evidence based, individualised, appropriate and provides good patient outcomes. With the vast majority of our funding coming from our communities, Rainbows is also answerable to the general public. If they are not satisfied with the services we deliver, or the actions we take, they are under no obligation to continue to fundraise to support the Hospice. We thank all of the people across the East Midlands who raise the vast majority of the funding required to maintain our services. Rainbows’ Director of Care and all clinical managers are responsible for the preparation of this report and its content. To the best of my knowledge, the information in the Quality Account is accurate and a fair representation of the quality of care provided by Rainbows Hospice for Children and Young People. Geoff Ellis Chief Executive 4 Part 2 Priorities for Improvement and Statements of Assurance from the Board The hospice was inspected against the Essential Standards of Quality and Safety on 6th November 2012 and was found to be compliant in all standards inspected with no identified areas for improvement. Following the completion of a service review in January 2013, including consultation with both staff members and families, and in line with Rainbows’ Five Year Strategic Plan 2012 – 2017, the following improvement priorities have been identified for 2013 – 2014: Priority 1(Patient Safety): To improve the care planning process. This was identified as a priority through consultation with both parents and staff. The current care planning process is unwieldy and there is concern about both the length of time taken to process admissions (often in excess of two hours) and the risk that staff may find it difficult to accurately follow complicated and lengthy care plans. The priority will be achieved through the introduction of a new electronic record. This will be managed through tight outcome criteria and wide membership to advice on streamlining the process. The development of ‘booking in clinics’ will be considered, along with the possibility of some aspects of the electronic care plan being completed in the family home in future. Progress will be monitored through audit and evaluation, including patient satisfaction survey. 5 Priority 2 (Patient Experience): To develop a care volunteer role that will enhance the work of the care team in supporting children, young people and families on arrival. This was identified as a priority following feedback from parents told us that a member of staff, preferably a volunteer, should be available to meet and greet families on arrival and look after them until their admission can be completed. The priority will be achieved through a task and finish group including two experienced volunteers, the volunteer co-ordinator, Lead Nurse for Training, Development and Safeguarding and the Director of Care. The volunteers will pilot the work during the spring of 2013, working with families and both care team members to identify what is needed and develop role descriptions and person specifications. Following this there will be a proactive campaign aimed at recruitment and training of appropriate volunteers. Progress will be monitored through evaluation of the pilot and feedback from families, staff and volunteers. 6 Priority 3 (Clinical Effectiveness): To formulate a strategy for the delivery of care for young adults that is appropriate to their needs, and is both equitable and sustainable. This was identified as the priority through Rainbows’ service review. Since increasing the upper age range to 30 years in 2010, Rainbows has seen a significant increase in the number of young adults supported (from 74 in 2011 to 95 in 2012). The review found that there was not a clear strategy for supporting young adults and their transition to other adult services. It was therefore agreed that a formal strategy would be developed in order to ensure appropriate high quality care for this group of service users. Following the service review a new post of Transition and Adult Day Care Co-ordinator has been developed. The appointee will take up post in June 2013 and will work with the Director of Care to develop and implement the strategy. It will be important for Rainbows to develop strong relationships with other adult service providers and the Strategy will take into account the need for robust partnership working with young people, families and other agencies involved in their care. Progress will be monitored through monthly meetings between the Transition and Adult Day Care Co-ordinator and Director of Care and will be reported to Rainbows’ bi-monthly Clinical Governance Committee meeting. 7 Statements of Assurance from the Board The following are statements that all providers must include in their Quality Account. Many of these statements are not directly applicable to specialist palliative care providers, and therefore explanations of what these statements mean are also given. Review of Services (mandatory statement): Rainbows is a nurse led hospice providing care and support for children and young people with life-limiting conditions from birth to 30 years of age, and their families. Medical care is provided through a 24/7 on-call service from a team of 4 GPs with training and expertise in palliative care. The Lead GP and Medical Director is based at the hospice on one day per week. During 2012/13 the hospice provided the following services to the NHS: In- patient services Day care services Psycho-social family support services Specialist palliative care advice and support The hospice has reviewed all the data available to us on the quality of care in these services. Rainbows’ Clinical Governance Committee receives bi-monthly reports, which enable them to review the quantity of care provided by all clinical services. A report on all clinical incidents is also provided, and regular clinical audits are carried out. The Clinical Governance Committee submits a bi-monthly report to the Board of Trustees. All services delivered by the Hospice are funded through a combination of fundraising activity and contracts with NHS. The NHS contracts mean that all services delivered by the hospice are part funded by the NHS. Where NHS funding is secured this only partly contributes to the costs of clinical care of children and young people. The cost of provision of a holistic family focused service are borne by the charity through fundraising activity, for example, family support, sibling support, cultural link work, spiritual support, play and recreational services, music therapy; complementary therapy, family accommodation, hospitality and bereavement support. On-going supplies and provisions, costs of maintaining the hospice buildings and gardens are all reliant upon fundraising/ charitable income. Participation in National Audits (mandatory statement): During 2012/13 Rainbows was ineligible to participate in the national clinical audit and national confidential enquiries. This is because there were no audits or enquiries relating specifically to specialist palliative care in 2011/12. Research (mandatory statement): The number of patients receiving NHS services provided or subcontracted by the hospice in 2012/13 that were recruited during that period to participate in research approved by research this committee was 0. 8 Quality Improvement and Innovation Goals Agreed with Our Commissioners (mandatory statement): A proportion of hospice income in 2012/13 was conditional on achieving quality improvement and innovation goals (CQUIN) agreed between the hospice and any person or body they entered into a contract, agreement or arrangement with for the provision of NHS services, through Commissioning for Quality and Innovation payment framework. No goals or indicators were identified by the CQUIN for the hospice. What Others Say About Us (the provider) (mandatory statement): The hospice is required to register with the Care Quality Commission (CQC) and its current registration status is unconditional. The CQC has not taken any enforcement action against the hospice during 2012/13. COPE Children’s Trust (known as Rainbows Hospice for Children and Young People) has been registered by the CQC under the Health and Social Care Act 2008 and has the following conditions of registration that apply: - Accommodation for persons who require nursing or personal care - Diagnostic and screening procedures - Treatment of disease, disorder or injury The hospice is subject to periodic reviews by the CQC and the last review and onsite inspection took place on 6th November 2012. The hospice has no actions to take and no points were made in the CQC’s assessment. The hospice was fully compliant and rated as low risk. The hospice has not participated in any special reviews or investigations by the CQC during 2012/13. The hospice also underwent a Safeguarding Quality Review by Leicester City Clinical Commissioning Group on 7th February 2013. Their final report stated that there were no areas of Safeguarding concerns identified, it was encouraging that all the staff spoken to knew the signs and indicators of abuse…staff had full confidence in the support and advice available by senior staff and the Safeguarding Lead Nurse…It was encouraging to hear from all staff of the Open honest ethos apparent through the staff at Rainbows. Data Quality (mandatory statement); The hospice did not submit records during 2012/13 to the Secondary Users Service for inclusion in the hospital episode statistics which are included in the latest published data. This is because the hospice is not eligible to participate in this scheme. In 2012/13 Rainbows collected and submitted the following data: Internal activity/performance data to Clinical Governance, Corporate Governance and the Board of Trustees Patient specific data to PCT’s 9 Annual data to Together for Short Lives Child death data to Child Death Overview Panel Information Governance Toolkit (mandatory statement): Rainbows’ score in 2012/13 for information quality and records management was not assessed using the Information Governance Toolkit. Clinical Coding Error Rate (mandatory statement): The hospice was not subject to the Payment by Results clinical coding audit during 2012/13 by the Audit Commission. Part 3 Review of Quality Performance Total number of children and young people served during the year 354 Number of new referrals received – % accepted, % declined 69% accepted 23% declined Number of children/young people aged 0 – 17 years 259 Number of adults aged 18 – 30 years 95 Number of bed nights used 2,740 Number discharged from service during the year 2 Number of day care episodes 784 Number of episodes of end of life care * 9 Total number of deaths during the year Number of deaths that occurred at the hospice* 40 8 % of total deaths in patients with diagnosed palliative condition % of deaths at the hospice in patients with diagnosed palliative condition 100% 100% Number of parental complaints 0 Number of parental concerns 5 * Many children with known palliative care needs can make an unexpected recovery from an acute infection or deterioration in their condition, and may require a number of admissions where end of life is anticipated during the final stages of their illness. 10 In May 2012 the hospice opened two additional beds, enabling greater flexibility in providing in-patient support. In 2012/13 Rainbows provided dedicated day care to young adults on three days per week. On two days this service is open to young adults with complex care needs and learning disabilities. On one day per week day care is attended by young adults with neuromuscular and oncology conditions. In 2012/13, Rainbows supported 36 children and young people receiving long term ventilation, including 6 with level 3 (life sustaining) needs. These children and young people require a 2:1 ratio of care when awake with one nurse and one carer allocated. Local Quality Measures Rainbows has chosen to measure performance against its peers using the Together for Short Lives Core Care Pathway. The following measures reflect our performance: Referrals: During 2012/13 the overall number of children and young people who were referred to the hospice increased by 31%. This was in part due to a greater awareness of our new facilities for young adults over the age of 18 years. It was also as a result of proactive work to promote the hospice service to children and young people with oncology conditions: in 2012 Rainbows’ Clinical Nurse Specialist for Palliative Care secured a Burdett trust Award aimed at increasing access for children and young people with oncology conditions that has led to a sharp rise in the number of referrals from an average of 3 – 4 children and young people per year to 13 during 2012/13. Our Participation in Clinical Audits: To ensure that the hospice is providing a consistently high quality service, we undertake our own clinical audits, using national audit tools, where available, developed specifically for hospices, which have been peer reviewed and quality assessed. This allows us to monitor the quality of care being provided in a systematic way and creates a framework by which we can review this information and make improvements where needed. Each year the Clinical Governance Committee approves the audit schedule for the coming year. Priorities are selected in accordance with what is required by our regulators and any areas where a formal audit would inform the risk management processes within the hospice. Through the Clinical Governance report, the Board of Trustees is kept fully informed about the audit results and any identified shortfalls. Through this process, the Board has received an assurance of the quality of the services provided. The following audits were completed at the hospice between 1st April 2012 and 31st March 2013: 11 CLINICAL AUDIT OUTCOME Infection Control - Mattress Audit (June 2012) Tests carried out on 13 mattresses of which 4 failed the audit. Of the 4, 1 was condemned due to multiple failure criteria. The remaining 3 required a replacement cover only. Play/Activity Assessments Audit (August 2012) Play team now aim to provide ‘preferred activites’ rather than ‘favourite activities’ to ensure that all terminology used by the play team is appropriate to the age of those they work with. The audit showed a vast range of activities that the play team staff are able to successfully provide to children/young people whilst they are staying at Rainbows. It also showed that the audit criterion being measured is being met with 100% of children/young people with a play/activity assessment enjoying their preferred activities whilst at Rainbows. Recording of Children’s Weight (October 2012) Generalised improvement noted following the re-audit (first audit carried out in 2009). Weighing competency continues to be completed during staff induction period. Introduction of a new way of weighing children to be covered in the hospice October 2013 training week. Communications Audit (December 2012) The results of the baseline audit showed that a wide range of communication aids are used by children/young people at Rainbows. Staff reminded of the importance of completing communication paperwork at admission. Learning needs identified in relation to difference communication methods - training carried out in January 2013 training week. Medication Error Reporting (December 2012) Investigation undertaken following discrepancy on measuring liquid controlled drugs and report forwarded to Local Intelligence Network (LIN). ‘Bung it in Campaign’ launched at the hospice. New bungs purchased and nurses reminded regarding the use of appropriate bung when drawing up and measuring liquid medications. Nurses also reminded regarding the correct syringe to be used when measuring liquid medications. Nurses reminded regarding the hospice medication policy and to record all discrepancies. Additional training provided for all staff on syringe drivers. 12 CLINICAL AUDIT Drug Chart Audit (December 2012) OUTCOME Staff reminded in handover to record weight/allergies and nurse ‘check’ label on admission. Nurses reminded to ensure medication charges are signed by a GP. To re-audit in June 2013. Record Keeping/ Documentation Audit (January 2013) Guidelines regarding documentation are included in orientation package for new staff. Reminder given to staff regarding documentation guidelines during handover. Spot checks on care notes to be carried out. To re-audit in January 2014. Child Protection Measures (February 2013) Updates to local procedures to be flagged to the Hospice Lead Nurse for Safeguarding by the LSCB. Lead Nurse for Safeguarding will update hospice policy following any actions from safeguarding meetings attended in the locality and information supplied nationally. Hospice Safeguarding Policy updated in line with the hospice Challenging Behaviour and Positive Handling Policy and Disciplinary Policy. Information on use of mobile phones/cameras in clinical area included in the hospice Safeguarding Policy. Hospice Lone Worker Policy updated with advice for staff to follow who identify concerns while visiting home who are worried about a child or young person/adult. Family Support team to be given separate safeguarding training (to commence Autumn 2013). Hospice to provide a draft of a work book for safeguarding training which could be adapted for all staff. Tissue Viability (April 2013) Individual children/young people’s tissue viability needs continue to be identified and managed through individualised care plans. Staff to fill in daily body maps for children/young people with an identified tissue viability issue/problem. All children to have assessment at admission. Hospice to work with the Tissue Viability teams in PCTs. 13 Quality Metrics/Quality Markers We Have Chosen to Measure Patient Safety: Number of patient safety related incidents/accidents, including medication errors 51 incidents 14 drug errors Number of reportable (to local safeguarding services) safeguarding incidents occurring in the organisation 2 Infection Prevention and Control rates: Total number of children admitted with known infection 38 This includes Number of C-Dif Number of MRSA 0 12 Total number of children who developed symptoms whilst staying at the hospice 8 (diarrhoea & vomiting ) This includes Number of C-Dif Number of MRSA 0 0 Clinical Effectiveness: Please see section on local audits. Patient Experience: An annual Family Satisfaction Survey is undertaken to secure feedback on the quality and range of services provided by the hospice. In 2012/13, 162 surveys were sent out, 34 were returned (21% response rate). An action plan has been developed following this and this is included below: Responses collated and summary developed. Summary of responses made available to all relevant parties (via notice boards, care team communication book, via Senior Management/Governance/Board of Trustees meetings). Feedback sheet for parents produced - to be available in reception and in parent’s rooms. Link worker to be identified for each family to address the inconsistency in staff looking after child. Additional soft furnishings to be purchased to make rooms look more homely. Physiotherapist employed as requested. Redecoration of parent’s flats to be undertaken. 14 Stools purchased to ensure staff do not have to stand when feeding children. In addition, the hospice encourages regular feedback from children, young people and families through our family satisfaction survey and readily accessible feedback forms that are available during every stay. One young person wrote “I think Rainbows is a great place to be. I love playing the drums in the music room. I especially like the sensory room. Rainbows also is a great place for disabled people that is what I think of Rainbows.” Some examples of comments and actions are detailed below:Comments Received Action Taken Could parents have keys to their rooms? You can lock from inside but not from outside - when going downstairs to see your child/eat/make a coffee anyone could wander into the room. I feel a bit uncomfortable leaving all my stuff in there. There have been a couple of occasions when children have burst into the room when I’ve been in there (thinking it’s their room) so now I lock it when I’m in the room. I’m sure nothing would happen or get taken but I would feel happier with a key – or if not a key could there be a code on the door? Keys are now available for all rooms. These will be kept in the key cupboard in Room 102. Note to be left in each flat to say keys are available from the Shift Co-ordinator if required but a deposit of £10.00 is required (which will be refunded on return of key). Would be helpful if a regular person came in each evening to help clear plates/pots. The staff have this extra pressure each evening whilst having to bath children and give meds and also get children into bed. This I’m sure would help them. Maybe a school person (teenager) or retired person may be able to take on this role. Confirm that we have actively sought volunteers to clean the kitchen in the evening and roles are now in place. Brilliant stay again thank you. The only thing that is not good is I used the yellow flat and the bed near the window is very loose so the board bangs against the wall each time you move. Bedside lamp would be good too. Downstairs brill as usual. Lamp purchased and plan made for the Facilities department to secure the bed. Young people’s bedrooms need black-out curtains. Too much light coming in, I don’t get up early and it’s very difficult to have a good sleep. This request is really important to me. Black out curtains purchased. The door to the lounge quiet room needs to not slam shut. The mechanism on the door changed to “soft closing”. Parents request suggestion: Please could the pathway out of the front gate have better drop kerbs and path by gate improved - difficult to get wheelchair up kerb. Thanks. Wheelchairs can gain access via the gate (to the left of the drive as you are looking out of the hospice). There is a drop-down curb further along the path. 15 Staff Satisfaction The Staff Satisfaction Survey was issued to 131 members of Staff and of this number, responses were received from 58 - a return rate of 44.3%, which is a 2% increase on last year. This year, 87.93% of respondents stated that they enjoy working at Rainbows and 91.38% agree that they are accountable to Rainbows for their work performance. However, 3.44% of staff indicated the work they do is not valued and 6.90% said they were unable to share ideas, suggestions and concerns. 81.03% of respondents indicated that their training and development needs are discussed regularly and are met by attendance at internal and external training courses or other events/professional association meetings and 89.65% recognised that it is their responsibility to stay abreast of the policies, procedures and legislation changes that affect their area of work. On Health and Safety, 91.37% agreed that Rainbows has a strong and positive health and safety culture. This year, 86.21% of staff know how to access the policies, procedures and legislation that affect their area of work and similarly, 86.21% know who to contact and how, if they require expert advice about issues arising within their area of work. On Equality and Diversity, 70.69% of respondents were aware of the work of the Diversity Forum. Furthermore, 82.76% of staff felt able to make adjustments to their day to day work to meet the requirements of diversity and human rights legislation. And finally, 86.2% agree that they take personal responsibility for minimising costs to the organisation on a day to day basis. The Board of Trustees Commitment to Quality The Board is fully committed to provide the best service for our children/young people in order to achieve our aims. The hospice has an established governance structure, with members of the Board sitting on both clinical and corporate governance committees. The board has an active role in ensuring that Rainbows provides a high quality service in accordance with its Statement of Purpose which is updated regularly and displayed in hard copy format at the hospice. The Board of Trustees regularly reviews the meetings structure across the organisation to ensure the appropriate committees and groups are in place with clear lines of accountability and input from members of the Board as required. In addition, the hospice has a comprehensive Risk Register which is monitored by the governance committees who regularly update the Board in relation to areas of high risk. The Board is confident that the treatment and care provided by Rainbows is of a very high quality and cost effective. 16 Statements from Local Involvement Networks (LINks) This is the first year that Rainbows has been required to submit a Quality Account. It will not be possible to engage with Leicestershire LINk going forwards as this organisation ceased to exist from 31st March 2013. As a result, Rainbows has engaged with the Clinical Commissioning Group which has the responsibility for the largest number of persons to whom we provide relevant services. Their comments on this Quality Account are shown below. Comments from Children and Families Commission Team, West Leicestershire Clinical Commissioning Group Thank you for the opportunity to comment on the Rainbows Quality Account for 2012-13. Comments are set out below. We note the Board commitment and governance structure which enable the hospice to address the quality of clinical care and the quality of the user and carer experience. We note that a CQC inspection took place in November 2012 against Essential Standards of Quality and Safety. We are pleased that Rainbows was found to be compliant against all standards. We note the improvement priorities for 2013-14. We would like to clarify if any quality improvement and innovation goals (CQUINS) are currently in place between any of the Commissioners and Rainbows. We note the positive findings from the Safeguarding Quality Review undertaken by Leicester City Clinical Commissioning Group in February 2013. We note the quality performance data and the quality clinical audits that were undertaken in 2012-13. We note the quality metrics on patient safety and patient experience. Are these measures agreed with commissioners? The response rate to the Family Satisfaction Survey (21%) is low and we would like to see this improve for 2013-14. We note the examples of comments and action taken. We note the staff satisfaction survey and would encourage Rainbows to improve the response rate from 44.3% to above 50%. Leon Charikar Children and Families Commissioning Team West Leicestershire CCG September 2013 We have made contact with our representative from Voluntary Action LeicesterShire (VAL) who have been commissioned by Leicestershire County Council as the new Healthwatch for Leicester and Leicestershire. However they decided, due to the current transition from LINk to Healthwatch, they were not in a position to comment on our Quality Account for 2012-13 but welcomed the chance to work together and 17 comment in the future. The following statement was received from the two Healthwatch Chairs (being Philip Parkinson - City - and Vijay Sharma - County): Joint Healthwatch Leicester and Leicestershire Response for Rainbows Hospice Quality Account 2012-13 Healthwatch in Leicester and Leicestershire was created on the 2nd April 2013. We are currently in a transition period from the Local Involvement Networks (LINks), as such we do not feel we are able to offer comment on the Rainbows Hospice Quality Account 2012-13. We are, however, looking forward to a collaborative and productive working relationship with Rainbows Hospice in the coming years. 18