FORGET-ME-NOT HOSPICE – WRITTEN EVIDENCE (PSR0002)

I am the CEO of a children’s hospice based in West Yorkshire. I am submitting evidence because as a hospice we are reliant on charity to fund our services, last year 97% of our budgeted funding was from retail trading and fundraising, but we operate within the health and social care economy, providing substantial savings to the NHS and are regulated in the same way as an acute hospital. This creates a great deal of disparity and is problematic when it comes to sustainable services that families depend on.

The response by the NHS has been simply awesome. However, the NHS does not operate in isolation of a wide range of charities and social care providers who during this period have been treated as second rate partners. This has been exacerbated in the media and in business with the consequence of widening the gap between the NHS and surrounding services. The public have raised vast sums of money for an NHS that they already fund and businesses, to attract more customers, have set up corporate social responsibility programs benefitting NHS staff whilst ignoring others. EG. 10% discount in Morrisons if you show your NHS photo ID at the till. These things will not help recruitment into the wider sector who already struggle with parity around pensions, pay rates and other terms and conditions.

There have been some great stories in the press about the work of other providers, but these were slow to be picked up as they were not about the NHS and I don’t believe that the sustainability of the sector as a whole has yet been considered. This has played out in relation to allocation of resources such as PPE. We had to resort to requests on social media before a sufficient supply was set up. One local lady was so taken by our appeal that she walked 3 miles to our hospice to hand over a half open pack of anti-bacterial wipes! It became clear very quickly that no-one knew the range of services in our area and how they work together or could work together, there does not seem to be any mapping and no overall picture of funding arrangements or service provision.

At the beginning of the crisis when almost all of our families were required to shield their children, and so cancel their respite services, we found ourselves overstaffed. As a result we loaned staff out to a number of local providers on a spot purchase, honorary contract basis. This initiative came from us but could have been managed more centrally via the CCG perhaps. In addition, we worked with hospital discharge teams to ensure children could come to the hospice for step down care where their families could be with them and the risk of COVID 19 transmission could be considerably reduced. This also unlocked intensive care beds and teams in hospitals to provide other types of care.

We believe we were able to make quick decisions because we have a pioneering and agile mentality. We could cut through what would normally be quite bureaucratic procedures because we were operating from a ‘best interests’ standpoint.

We have developed some online services, and these definitely plug a gap, but we also know that there are some things that will always work best face to face, for example bereavement support in the acute phase of loss. With appropriate safeguards in place, we have still been able to offer access to our snowflake suite and enabled people to do memory making with their child. The design of our hospice has allowed for this because we can segregate this particular area from the rest of the building.

We developed a screening tool to help us understand which of our families were most vulnerable. This was shared with a number of other children’s hospices. The tool was used over the phone, but is quite sterile in its application. Lots of the public donated gifts for our families, so we made these up into packs and did doorstep drops. This created a different type of conversation with families and we started to learn more about how difficult things really were, including impending family breakdown. As a result, we developed an emergency respite offer, a 48 hour break in the hospice for the child. Many families have now used this and have fed back the difference it has made. All of our families have protected characteristics and we have continued to reach out to all of them.

Collaboration takes time to develop and deliver, but in an emergency can just happen if you are in the right place at the right time. Having a network of relationships, vertically and horizontally is useful and certainly helped us during this time. Normally, we would be hampered by endless requests for data, monitoring, policy frameworks which all cost money to provide. In many respects, the fact that we are rated outstanding by CQC should be enough, but never is. The commissioning framework does not help children’s hospices since there are too few people in any one CCG area that will ever need our service, and so our work is never seen as a priority. This might change as ICS’ find their way and start to operate across their footprint in a more strategic manner, but they will still speak the language of a large provider and expect the same standards without being willing to support the costs of meeting those standards. I think we have proved our value to the system, so now I want to be assured that we will be funded as a valuable and trusted partner and not have to fight for every penny and then spend too much of it justifying who we are and what we do.

During the heat of the crisis, we had an interesting discussion with a large and well know children’s hospital who wanted to discharge a child back to their local area. The child was not well enough to go home, and is a child known to us. We offered to take the child as a step down care package but the hospital stood in the way of that and insisted the child went to their local hospital instead, where the parents could not visit and where there was a bigger risk of cross infection. Underneath this was an arrogance about hospitals knowing best and an old fashioned view that hospices are for dying children. Even the parent’s wishes, as expert partners in their child’s care were overruled. This is clearly a cultural issue, and one of those that has to change to promote real integration which will work where there is trust, respect, knowledge and relationships and professionals listen to and work with the wishes of patients and their family where the patient is a child.

In a crisis, people want to help, hence the flood of volunteers and very positive response from the charity sector. What needs to happen now is that volunteers who wanted to help need to be directed to charities who need support and the funding and reserves used by charities to respond to the crisis need to be replaced. The £750m provided to support charities was too slow and is a drop in the ocean compared to what charities would have raised during this time, and where it is available has far too many restrictions attached to it. The Big Lottery have explained they are not permitted to fund core costs….services are delivered through core costs. This is like saying that we want nurses to nurse but we won’t pay the HR team to recruit, induct, train and pay them. It is likely that many charities will be lost forever as a result of this crisis, despite responding so positively to the call for action. We have shared our resources, provided capacity to the NHS and wider social care system and acted positively to keep children out of hospital at this time, preserving crucial NHS resources. But this is not integration, it’s a sticking plaster placed over an open wound. We need to develop the system leadership by default concept as set out in the 10 year plan. We need to set out the pathways in and out of the system and attach funding to the pathways not leadership and not corporate bodies. We need to legislate for this so that the care people receive can be delivered by anyone within the system and money follows the person around the system, and we need to build new accountability frameworks that are focused on best interests and choice, balanced with more preventative funding. We need to incentivise integration by looking at corporate governance and considering the directors code. We need to move away from data being the answer to everything when what this is really all about is the difference we make to quality of life. We need to rehumanise what we do and always remember there is a person in the middle of our interventions who will be impacted by what we do, as in some cases will many others around them. The charity sector are very good at this, and there is much to be learned from them, but they have to be seen as equal partners, albeit with specialist or niche roles. We have also learned that charities are not a nice to have, they have been essential to our response and will continue to be so as we start to uncover some of the longer term impacts of the crisis.