Last week I spoke at the Women Institute's (WI) AGM on Continuing Health Care (CHC) about the problems people with long term conditions face to access care.
Over 65,000 people in England and Wales use Continuing Health Care (CHC) - a care package that is provided free of charge by the NHS. It is awarded to people who have a substantial health need and can be provided in different settings, including a person's home, a care home or hospital.
CHC exists to help ensure that people with very pronounced levels of need can access support to manage their condition in an appropriate setting, avoiding unnecessary hospital stays and trips to A&E.
For some people with MS providing the right support can involve complex management, including interventions that could need the support of a nurse - like peg feeding, management of complex breathing assistance and infections. CHC can be a lifeline for people in need of this level of support. However, the system is not currently fit for purpose.
Too often we are finding that those assessing people for CHC lack expert knowledge of a person's condition. We have heard from a number of local MS specialist nurses for example that some people with MS who they have referred for CHC have been turned down because the assessor didn't adequately understand the impacts of the condition.
Not receiving this funding can mean that people are not able to get the specialist support they need which can lead to very lengthy and costly hospital admissions. This is not desirable for people with MS or the health service.
People are missing out on vital support as a result of an assessment that doesn't capture the reality of living with a complex and uncommon condition like MS. The assessment needs to capture all the different ways that a person can be affected by the condition.
We are also seeing situations where people with progressive and non-improving conditions are told they will get better and have funding withdrawn. People with MS have been asked to attend a reassessment for CHC, only to be told that their condition had improved and they were no longer eligible.
A lack of integration of health and social care services can mean that when people have their CHC package withdrawn, they suddenly are not being supported by either the NHS or the local authority. They fall into the gap between the two systems. People with MS report 'going in circles' as neither the NHS or Local Authority will take responsibility for providing the care they need.
There are some areas where CHC is working better for people with MS. In the North East, health and social care services have worked well together on this issue, undertaking joint assessments so that people did not get stuck in the no-man's land in between.
People with MS then reported a much more positive experience that enabled them to access the care they needed, when they needed it. That is the difference a comprehensive assessment can make.
Every person with a long term condition should access the care they need when they need it - it is not acceptable for people with very serious conditions like MS to face a merry go-round of decision-making where no service will take responsibility for the care they need. Or for the assessments they receive to be used an opportunity to reduce their care, telling them that they are simply someone else's responsibility.
Coupled with further reductions in social care budgets over this parliament, we are concerned that people will be even more vulnerable as their support needs increase.
They must not fall through the gaps during squabbles over whose budget they are deemed to sit in. These distinctions don't mean anything to them. Assessments must be made on the basis on need - not arbitrary distinctions about what type of need they might have.