National square table report, scotland

National Square Table Report,Scotland

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NaTioNal SquaRe Table RePoRT, ScoTlaNd

Contents

Foreword 3

Summary 4

Themes 6

Pledges of Action 14

Audience Responses 16

List of Attendees 17

Forewordevery child and young person in Scotland matters. Their hopes and dreams, and those of their parents and carers, deserve to be heard and acted upon. unfortunately that does not always happen and we need to make sure that when the chance to hear these voices arises we take it, listen carefully, and act.

That is why i was delighted to be able to be part of the Square Table event on 20 November 2012. i was impressed by the commitment to improving the lives of those who need it the most and moved by the evidence parents provided on the difficulties they face day in, day out. This report and the pledges for action that have been made are an opportunity to remove some of those difficulties. i look forward to hearing the difference the pledges have made to families in the future.

The Framework for Palliative care for children and Young People which we published in November gives structure to the delivery of palliative care services and i know that its publication has been welcomed.

However, getting this right is the responsibility of all – health, social work, housing, education – and all have a role to play in ensuring that each child’s need is met, and must play it to the full.

i, and my Ministerial colleagues, have met with children’s Hospice association Scotland (cHaS) and Together for Short lives following this report to consider ways in which we can work together to ensure that all those involved understand their role.

i welcome this report and congratulate cHaS and Together for Short lives for their work in bringing the voices of those who need to be heard to the forefront of our decision making.

Alex Neil MSPCabinet Secretary for Health and Wellbeing

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Summaryon 20 November 2012, a Square Table meeting was organised by cHaS and Together for Short lives, the uK wide children’s palliative care charity.

The Scottish Square Table meeting was the culmination of a series of 42 Square Table events held in 2011 across the uK convened by local children’s palliative care providers supported by Together for Short lives. This included three regional events in Scotland – held in Glasgow, edinburgh and aberdeen. in all, 92 participants took part across these three regional Square Tables in Scotland of which 13 were parents who were either caring for a child with a life-limiting condition or whose child had died. a ‘learning and evaluation Report, Scotland’ from the events was produced.

a uK wide Square Table event was held in Westminster in November 2011. a pledge to hold a national Scottish Square Table was made at this Westminster event, and taken forward by cHaS chief executive, Maria McGill. This national meeting was championed by the then cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP, and held on 20 November 2012.

This report highlights the discussions and outcomes from this national Scottish Square Table meeting.

around the table were 30 participants consisting of the following people:

■ a number of parents to inform the table of their own unique view of care as it is in Scotland at present.

■ Ministers, leaders and policy makers from the health, education, social care and faith communities.

■ Those with national clinical expertise.

■ Those engaged in providing leadership in volunteering and in the voluntary sector.

■ The hospice sector.

■ Those concerned with children and with disability.

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as well as the participants around the table, over 60 observers were given the opportunity to attend and participate in this special event. Social media was used to connect with interested parties not in attendance at the Square Table, through twitter and a dedicated hashtag #squaretable.

The event offered a unique opportunity to explore the future development of children’s palliative care at a critical time. cabinet Secretary for Health and Wellbeing, alex Neil MSP, attended the first session of the Square Table and heard directly from parents of children with palliative care needs as to where they saw improvements to service provision being necessary.

attendees were asked to pledge an action which would positively impact on future service provision and coincided with the roll-out of ‘a Framework for the delivery of Palliative care for children and Young People in Scotland’ which has been developed by the Scottish children and Young People’s Palliative care executive Group (ScYPPex) and published by the Scottish Government Health directorate.

in his opening remarks as chair of the event, Robin Knowles, cbe, qc, chairman of Together for Short lives, stated,

“The event is called a Square Table to symbolise the equal weight and importance of all participants’ views. The discussions are facilitated in a way that enables a pooling of views and experience, identification of critical issues, deepening of understanding, and development towards practical solutions that will make the most difference to children and young people with life-shortening conditions and their families. all of us around the table have a responsibility to make a pledge on the day that will make a positive change to children across Scotland.”

CHAS Chief Executive, Maria McGill

“Nearly 2,000 will have sat around Square Tables like this and, very importantly, many parents have been numbered amongst those. already following some of those Square Tables, differences have been experienced; some small, some bigger, some underway, some completed. importantly for the future, many pledges have been made, made with a sincerity of commitment that can be the product of shared views on a day like this; but also made in the certainty that actually if everyone contributes with an action or a commitment, the total sum of those actions or commitments will be greater than the addition of the individual parts. i think the most important thing to say is that we are at a time of huge opportunity in each of the four nations not least in Scotland.”

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ThemesThe key themes to emerge from the Scottish Square Table were:

1. awareness of and access to services

2. advocacy across Scotland

3. communication

4. policies and frameworks

5. integration of services

1. awareness of and access to services

When asked to describe how they viewed current services for their children, parents around the table spoke of the ‘battle for services’ that they face.

“We have quickly learned that you need to choose your battles very carefully; you can’t win them all but the system needs to make it easier for parents so that everything is not a battle because life is difficult enough dealing with the situation you are in.”

“We battled for quite a long time with issues and trying to find support, i live in aberdeen and until we actually got some support from cHaS we were pretty much adrift and since then it has been cHaS that have supported us through emergencies, pretty much everything, where as we have had to battle once again with social services back in the north east.”

“We have had very much a mixed bag during that time. i think a lot of it is over the 12 years you get to know a lot of the care providers as well and i think that we sense their frustration as much as ours that they are working within a system that restricts and holds them back and sometimes we find ourselves getting embroiled in their internal politics and battles as a result of that as well.”

“This is something which really needs to be looked at and as i say we have a fight every day to keep our son healthy and well, you don’t need to be fighting these other services outside of that.”

“We never dreamed that we would need a social worker or a carer for our child, we had to fight to get him into a school. He was already in a special needs school but once his medical needs increased, nobody wanted to know.”

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a couple of parents spoke of positive experiences but some felt that they faced a ‘postcode lottery’ when it came to provision of services.

“it’s a lot to do with the postcode lottery, and if you are lucky to be in an area which is selective, and to get more than the ones up north. up north seems to fight more than what we have to do in central. central seems to be more adaptable to it.”

This view was supported by some of the professionals around the table.

“We have over 1,400 stakeholders of professionals and parents involved and what we hear constantly is the experience for some parents isn’t very positive, it is this postcode lottery.”

“i think that public health nursing/health visiting play a very pivotal role in delivering services to children and young people and also as alluded to earlier on - community children’s nursing.”

“People shouldn’t need to shout and scream as much as they are shouting and screaming just to get the service provision that’s required for their children.”

“i am very privileged to see things at the coalface and at strategic level but one of my concerns is that there does seem to be a decreasing number of community children’s nurses across Scotland.”

Parents and professionals spoke of a lack of awareness of services that may be available to them being an obstacle to accessing services. Some identified the declining number of community children’s nurses impacting on families being appropriately informed of the services available to them.

“There is a gap for babies who are diagnosed before they are born with life-shortening conditions or soon after they are born in the neonatal period. For Scotland that is probably about 150 neonatal babies per year… and there is a gap in terms of palliative care and end of life care pathway staffing and training at present in both england and Scotland – that’s part of the work we are trying to provide information for.”

“i can’t put it across enough that that needs to be addressed for all families because they just seem to struggle and they just don’t seem to get the help for the child. it is hard enough to know that your child is terminally ill, that’s enough to go through on its own. They should not have to go through anymore; they should get everything that they need and be pointed in the right direction.”

“The community nurses had to come out to the house to give us a hand with a dressing that we required and they were aghast when they came into the house because we have stayed in the one house in the one area since (child) was born and they had no idea that he was there, his needs, his requirements; and i didn’t know they existed either.”

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There was a discussion on the reluctance of some professionals to mention services to families. Some felt decisions were being made by professionals as to whether families were ‘ready’ to hear about palliative care services, and that these were not always the right decision.

“For us we had to find cHaS ourselves. i do all the research, i do all the finding, i do all the looking. No-one comes and offers me any help - why don’t you try this or why don’t you try and go ask for this service, or why don’t you go and have a chat with this person. at least it would be brilliant if the clinicians, wherever they are, if they supported options for parents. Not every parent wants to hear that they have to go to a hospice or have to chat to a hospice, but some of us do and some of us really appreciate the support.”

“With the identification of palliative care needs, there is an incredible education required to allow people the confidence to recognise that life is short and when life is limited and not to pretend that by avoidance we can some way save a life. it is incredibly important that we look through the filter that is about maximising quality of life rather than length of life.”

“People are not accessing or making partnerships because palliative care has all become about the very end of life. The range of resources that organisations and the voluntary sector have that can provide some of that supportive care up to the end of life is really important and shouldn’t be ignored. The idea that people aren’t accessing cHaS, or aren’t talking to organisations, or thinking where our nurses can support parents when they need it, because of the perception that it is only those in the final days of life… i think that we need to empower people to think about palliative care in that broader supportive context.”

a parent who had positive experiences suggested learning from this could be a solution.

it was also recognised that parents often had to conduct their own research into which equipment and adaptations were available to them.

“it is really important to note that some families who are out there don’t get the basic help with some equipment, some parents don’t even have a hoist to move their children around and it’s like a constant battle. i have heard that from so many families, they just don’t get that basic help in the home.”

“There are processes or procedures, people in your organisations at the minute who do bring all of these things together, so i think, don’t reinvent the wheel, if something works well then emulate it in other places so that that works well for other parents.”

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2. advocacy across Scotland

advocacy for families was discussed and in particular the development of a key worker system was considered to establish how it could benefit children and parents to have a single person advocating on their behalf.

“it would be fabulous to have someone to be able to pull all of these things together and for stuff to go on behind the scenes so that i can just be mum.”

“if you are going to introduce a key worker role we would need to be very careful who these people are, how they are prepared and how they are training because that’s how it will sink or swim.”

“i spend of a lot of my time doing things, running around getting appointments, going to appointments, reiterating the same old thing over to the next person who does not know him, you know, it’s draining. it takes a lot of energy and all we want to do is look after our children and enjoy the time we have got with them.”

“You find that you need to have two different heads, you have the parent head, and then you need to put the business head on because you need to when you are dealing with different departments. You need to take the emotional side out of it and put the business head on and deal with the facts, put the facts down on paper and deal with the people listening to the facts.”

“i feel passionately about the need to support the families to have the key worker and i think that one of the strong messages for me coming across today from the parents, is their role as being key workers; that they do so much of the work but they need someone to support them to coordinate the care, to take the pressure off them so that they can, just as you have said, care for your children and take that element of concern and anxiety away. Somebody who will be responsible and accountable to ensure that everyone is speaking to each other and that they are coordinating a plan for the child.”

“access is more about the geography, it is access to the expertise, remoteness is not about geography either and whatever else needs to happen we have got to find a smarter way of making contact with those who need it by those who can give it. advocacy at all levels, we are meant to have Getting it Right For every child (GiRFec), we are meant to have policies which provide that advocacy and support.”

Professionals also supported families having advocacy and champions across Scotland.

“i think that the time is right for us to come up with some sort of solutions with some champions for specific elements of child care in Scotland.”

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3. communication

communication between and with professionals (with the need for improved training in communication) and between families, for instance in support groups and by using social media, was discussed.

“i think a lot of it is over the 12 years you get to know a lot of the care providers as well and i think that we sense their frustration as much as ours; that they are working within a system that restricts and holds them back and sometimes we find ourselves getting embroiled in their internal politics and battles as a result of that as well.”

Some of the attendees around the table raised concerns over how professionals communicate with each other, and where they get their support to make decisions from.

“a good team needs leadership. They need communication and leadership. Someone needs to make decisions, good decisions based on an awareness of the situation. These are the key ingredients and for whatever reason those ingredients i don’t think are always there and i think that there are many of them missing from the provision of palliative care.”

“You get that at all levels… where one department have been involved in arguments between departments. i’ve literally been in the middle trying to mediate between departments sometimes…”

“i think a helpline for professionals so that the example of the oT’s (occupational Therapists), coming against each other, a lot of that will be to do with their criteria and boundaries and not having the permission – where do you take that? There is sometimes no respite when you are struggling with a care package because you can’t get funding, when you are struggling with where you get equipment and is it a social bed, or is it a health bed, or what kind of hoist is it?”

“our experience outside cHaS is with local authorities, education boards, NHS, not NHS Glasgow may i say, but communication between these services is disjointed.”

one parent spoke of the benefits of meeting or communicating with other families, and how this can increase awareness of services available.

“What i would love to see coming forward from this is communication from parents and i have learned so much from other parents while attending Robin House or just being on facebook or through meeting new friends.”

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4. policies and frameworks

The Square Table attendees discussed the importance of the new framework and how this may assist professionals to better support families.

“We have an opportunity here with all of the policy strands, and i understand that there are lots of policies out there, but to bring all of these policy strands together to ensure that we can meet the needs of the child and the needs of the child are paramount.”

There was confusion around Getting it Right For every child (GiRFec) and whether in reality this was being properly applied. There was also discussion of legislation to enforce GiRFec.

“GiRFec is national policy and it has been developing over the last eight years and it has been driving forward and we have seen improvements. but i think that they are quite slow improvements, particularly in more difficult areas. in more complex areas of integrated children’s services we aren’t seeing the improvements we would like to be able to see. in the current trajectory it may take us goodness knows 20 years at a guess, so that is why we are taking forward the legislation that we need to take forward to implement children’s planning for individual children and also to ensure that public sector organisations work together. There will be a duty for them to work together and to cooperate and to plan services at this point in time, and we will try to take forward and try to give some redress to that for individual families as well.”

Some of the attendees around the table had not heard of GiRFec themselves or did not think it was widely known amongst all service providers.

“The first time that i heard the word GiRFec was sitting at this meeting last year.”

“i would just like to know what the training is for everyone to know what is involved in GiRFec? our experience with it is that it has never been mentioned. as i was trying to fight for a school placement for our child and it was only us that brought it up as almost a threat and a tool that we knew what we were talking about.”

“The health care professionals i work with… don’t know that it exists. We had a discussion at our last board meeting and brought up the issue of key worker and GiRFec and i was faced with blank looks.”

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For some, the policies and frameworks were seen to be getting in the way of effective care provision.

“My experience of chatting to other parents who have had GiRFec meetings is no-one wants to take responsibility, everyone sits round a room and keeps quiet and tries to avoid things getting pinned on them, and there is also an understanding that does it actually achieve anything? So i think that if you bring everything up with the understanding of making sure that all clinicians know what GiRFec is and know what their responsibilities are, we might actually get somewhere.”

“My comment is around policies and the framework from a parent’s point of view. in the 12 years that we have had (child) at home, on no single occasion has any health professional ever come to me, or any professional, and said “do you know what? There is a policy and there is a framework in place and because of that we will do this for you”. The only thing i have ever heard, and i am talking about my local authority in particular, is there is a policy here that says we can’t help you because of that or we know what you mean but there is guidance that says that we can’t do that.”

“When you get right down to it, it usually involves an individual speaking to me and that’s the bit that i am interested in. i’m not really interested in pathways and strategic areas. i do have to get interested in it because i understand that it is the only way to influence but for me as a father, i only want to have to deal with the individual and get the service that i need.”

There were strong feelings that there should be accountability for implementing policies and frameworks, with one parent in particular relating it to his own job in the private sector.

“accountability is a big influential word, if people are not implementing what they are instructed to be implementing. obviously within the social or government departments there are KPis and all the rest of it which people are judged upon. if councils are not performing, if health boards are not performing, shouldn’t heads roll? i know that my head would roll if i was not performing.”

“What are we putting in place to ensure that these do not just become policies that sit on the table? …Where is the accountability, where is the assurance going to be that these appointments are made? …Where is the accountability, the evaluation to make sure that these are going to make a difference? So i guess my concerns are two-fold, where is the accountability with these documents and how are we going to ensure that they make a difference and don’t just become a bureaucratic exercise?”

“i would like to… try to use the palliative care framework and create what we think are the key targets, the essential aspects of care that every family should achieve, make them a target, and agree some accountability.”

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5. integration of services

There was general consensus around the table that there needs to be integration between health care, social care and third sector to improve services for families. it was recognised that it is timely to address this.

“We seem to have a challenge with the silo that is between the NHS in Scotland and the third or voluntary sector and they seem willing in principle to work with us but in practice are very caught up in bureaucratic hurdles that prevent that.”

“i hear it not only in children with life-limiting conditions but throughout the whole NHS, you hear people say that there is no joining up of services and one thing i did want to highlight… we are all working very closely with health and social care agendas so we are trying to look at providing education not just for people in silos in health, but within social care and third sectors. i know we have been working with voluntary organisations, so there is a move towards that.”

“if palliative care is truly going to be integrated throughout the course of the child’s illness then we need to make sure that the tertiary services are up to it, the social services and the housing services; and some of the ideas that cHaS has brought forward to better integrate the philosophies and the principles in the neonatal units in the tertiary centres i think is the best way to go.”

“Partnership working, it’s a term that can trip off the tongue so easily but in reality it can work and there are some examples of some good partnerships.”

“i want to get to the position where any bureaucratic issues do not stand in the way of getting the aids and adaptations for people when they need them. Now that’s not an easy objective to achieve when you are dealing with 32 local authorities and 14 territorial health boards, 200 housing associations and a multitude of other third sector and local agencies, but i do think that we can do it much more effectively than we are doing at the present time.”

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Pledges of Actioneach attendee around the table was asked to pledge an action, in response to the themes that they had heard, which would positively impact on service provision for children and families. The attendees were all in the position to commit their organisations or teams to these pledges, and affect real change.

cHaS has recorded the details of who has made the pledges below and will take responsibility for making sure that these are followed up.

1. a parent will speak to cHaS about a social network site to share best practice with other parents and learn how to get it right.

2. an advocacy role will be built into the palliative care work stream of Scottish children’s cancer Network.

3. children and young people with life-limiting conditions and their families will be involved in research which the child commissioners office will be doing on disabled children’s access to services.

4. a discussion of practical transition planning within adult Hospice settings will be held via the Scottish Hospice Forum.

5. a discussion by the Scottish Partnership for Palliative care council specific to the integration of children and young people in National action Planning will be held.

6. To commit the National Scottish Partnership for Palliative care council conference 2013 to children and young people’s palliative care.

7. National Managed clinical Network for children with exceptional Health care Needs will listen, discuss and provide information to parents and carers and professionals about the issues and improvements to the services provided to children with exceptional healthcare needs. in particular, we will promote the role of lead professional for children with complex and exceptional health care needs and child’s plan.

8. The Scottish ambulance Service pledges to work with children, young people and families, and services in care planning, to meet their needs when they need to access our service (scheduled or unscheduled).

9. SPeNS will raise the issues of the needs of children who do not meet the criteria for the cHaS service but have a deteriorating quality of life that not only affects them but their whole family. Short breaks and respite should be an integral part of care available.

10. SPeNS pledges to work to highlight and implement the children and Young People’s Palliative care Framework Scotland. To identify additional champions to take the important messages to the wider public. To make it the ‘norm’ to talk about palliative care.

11. interfaith Scotland pledges to raise awareness within its 36 faith community members and facilitate dialogue with members.

12. To continue to add people to the Scottish children and Young People’s Palliative care Network (ScYPPcN) circulation list to keep them updated with Scottish Palliative care developments and maintain the momentum from today. We can achieve more together.

13. a staff member from the Royal Hospital for Sick children in edinburgh pledges to use my contacts with families whose children have cancer to actively collect feedback about what one thing could change/worked well to help future families (regarding palliative care phase).

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14. a representative from Simpson’s centre for Reproductive Health pledges to commit to completing the Framework for Palliative care needs of the unborn and newborn baby.

15. Marie curie pledges to support cHaS with our expertise and resources to make parents lives less of a fight and be able to spend more time caring as a mum and dad.

16. To discuss how parents can be part of Marie curie expert voices group.

17. Marie curie will understand better the palliative care transition needs from a child to a young person to inform service developments.

18. Together for Short lives will take the learning from research that just four hours training on palliative care within neonatal units makes a difference and try to ensure we can achieve this in Scotland.

19. The university of dundee will lead a project to introduce inter-professional and inter-agency working together by learning together from entry to the undergraduate programme. academics and practitioners will also gain from participating in the development and teaching of this initiative.

in addition, the cabinet Secretary for Health and Wellbeing pledged to hold a cross-cabinet meeting with cHaS and Together for Short lives to address issues raised at the Scottish Square Table meeting.

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Audience Responsesin the audience observing the Square Table were health care, social care and voluntary sector workers. They were given the opportunity to write their reflections on postcards and pin these up on a display board in the room. They were also asked to make pledges if they were able to commit to these.

a number of postcards were filled out, which reflected the themes being discussed around the table. a few of these are included below.

1. awareness of and access to services■ The daily challenges faced by multi-agency working and the lack of awareness needs to be addressed to provide equity

of service provision.

■ it is crucial that we deliver the best practice to all children and young people and their families, not only those who shout loudest. The child, young person or parent shouldn’t have to shout to get what they deserve.

2. advocacy across Scotland■ Scotland’s families need a key worker to help be our child’s ‘Pa’ - someone to liaise with Social Work, education,

Health and cHaS.

■ There are opportunities that i hope will be taken in relation to the children and Young People’s bill to reinforce the importance of well-trained key workers/lead professionals and the obligations on statutory services to provide the services identified in a child’s plan.

■ Parents should be allowed to be individuals as well as family members. They are not key workers, secretaries, therapists. if we look after parents then they will become more effective carers.

3. communication■ i have found the voice of the families very powerful and the creation of a more formal mechanism to collect, collate

and coordinate their experiences on an ongoing basis would assist the translation of policy into meaningful front line outcomes.

4. policies and frameworks■ Regarding GiRFec, why do we not directly educate parents about this? Have a national programme not just

professionals.

5. integration of services■ integration needs to be at culture level, not just policy.

■ Suggest tackling at least some of the problems identified today, not by spending more money but by 1) connecting people who need help with those who provide help and 2) addressing the poor practice in our public services.

■ There will be equally committed people in organisations, Health boards etc who want to do their best for children, young people and families but who are frustrated by systems, policy and guidelines which constrain. Find a way to help them provide the care they want to.

on the day, twitter was used to connect with those who wished to join in the discussions but could not attend the meeting in person. a dedicated hashtag #squaretable was used and cHaS twitter followers were posed the question, “if you could, what one thing would you change to make a difference to your child’s care?” Responses included:

■ Put a legal duty on professionals to provide services he has been assessed as needing.

■ To be able to just be a mummy.

■ acknowledge and give status to parent/carer expertise across services especially where condition is rare/complex.

■ Just hope things will start moving in the right direction and parents’ voices were heard loud and clear.

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List of Attendees Sincere thanks go to all those who attended the meeting and gave such valuable contributions and pledges.

The Scottish Square Table was chaired by Robin Knowles, cbe, qc, chairman of Together for Short lives.

Around the table were:■ Professor Gordon Dickson, chairperson, cHaS

■ Maria McGill, chief executive, cHaS

■ Dr Patrick Carragher, Medical director, cHaS

■ Barbara Gelb, chief executive, Together for Short lives

■ Caroline Pretty, bereavement Service co-ordinator, NHS lothian (on behalf of the national bereavement hub)

■ Dawn Moss, ceN lead clinician, Managed clinical Network

■ Edile Murdoch, consultant Neonatologist, Simpson’s centre for Reproductive Health, edinburgh

■ John Froggatt, deputy director, child and Maternal Health, Scottish Government

■ Professor Myra Bluebond Langner, Professor and True colours chair in Palliative care for children and Young People

■ Jean Davies, Strategic Paediatric educationalists and Nurses in Scotland (SPeNS)

■ Robert Fraser, Health advisor, children and Families, Scottish Government

■ Dr Deirdre McCormick, Nursing officer, Scottish Government

■ Diana Hekeram, Head of Partnerships, commissioning and development, Marie curie cancer care

■ Darlene Tough, consultant Paramedic, Scottish ambulance Service

■ Caroline Mearns, educational Programme Manager, NHS education for Scotland

■ Professor George Youngson, cbe, co-chair of the Managed Service Network for children and Young People with cancer

■ Rita Docharty, interfaith Scotland

■ Stefan Stoyanov, Policy officer, Scotland’s commissioner for children and Young People

■ Jacqui Lindsay, chair, Scottish Hospice Forum

■ Denise King, executive director, Scottish cot death Trust

■ Dana O’Dwyer, chief executive, capability Scotland

and most importantly the following parents sat at the table: caroline Koseglu; Tracy Johnstone; Matt and denise creaney; donna and Phil quinn; lorna and Malcolm Taylor.

if you would like to pledge an action in response to this report please contact cHaS by visiting www.chas.org.uk

“The parents’ voice was the predominant voice and was very much at the centre of the discussions. each and every one of them was so powerful in the messages which they conveyed.”

“as someone who is generally very focussed on the end of life, death and bereavement issues, the discussions were a timely reminder for me of the wider context, and the long journeys of loss and struggle that families experience. The parents were so inspiring and it was great to hear their views, experiences and priorities at the heart of the discussion.”

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Children’s Hospice Association Scotland(CHAS)children’s Hospice association Scotland (cHaS) is a charity that provides the only hospice services in Scotland for children and young people with life-shortening conditions.

cHaS offers care in two children’s hospices, Rachel House in Kinross and Robin House in balloch. The hospices support the whole family by offering short planned breaks, emergency support, end of life care and a range of bereavement services.

cHaS also provides a home care service, called cHaS at Home, staffed from both hospices and with dedicated teams in the North of Scotland. The service offers care to families in their own homes when they need it most.

cHaS supports over 300 families, as well as a significant number of families who receive bereavement support. The services are funded mainly through the generosity of the many supporters who help raise £8 million needed each year to provide these vital hospice services.

Visit www.chas.org.uk

Scottish charity number Sc 019724

Together for Short LivesTogether for Short lives is the leading charity for uK children’s palliative care. We support those who help, love and care for children and young people who are unlikely to reach adulthood. We work with children’s hospices and a range of other services across the country to ensure that every child, young person and their family has the best possible care and support whenever and wherever they need it. From the moment of diagnosis, for whatever life holds, we help to ensure families make the most of their precious time together.

Visit www.togetherforshortlives.org.uk

Registered charity in england and Wales (1144022)

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CHAS Head Officecanal court, 42 craiglockhart avenue, edinburgh, eH14 1lT Tel: 0131 444 1900email: [email protected]

www.chas.org.uk

National square table report, scotland

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Transcript of National square table report, scotland