This is a letter I sent to my CCG this week in response to their formal answer to a previous question.
My CCG does not allow questions at their meetings. And written ones receive written answers that are placed on chairs at the next meeting. I had to ask for my their reply to be sent to me.
There seems to be a denial that ‘rights’ have any relevance, although there is an acceptance of ‘significant dementia need’, which they have singularly failed to meet thus far. Probably like many other, but not all, CCGs.
Thank you for your response to my letter in October. This is what you said:
1. The NHS does not provide services on a rights based approach it operates on a needs based approach. There is clearly significant dementia need as you rightly identify that needs meeting and that is the purpose of current papers and work plans going through the system and SCCG governance at present.
2. We have plans going through CCC working group currently that outline what has been achieved and what is still required against the original strategy. Investment is required and this is proposed within our overall MH short-medium term investment plans at an affordable level. This will be managed through the usual governance process of business cases and will need to be signed off as part of the overall CCG spending plans for the coming period. Dementia is also addressed through the STW long term plan which will be published later this year.
Director of Performance and Delivery
In response to this I challenge your interpretation of ‘rights’ and needs, and your explanation of a requirement to meet these (or not).
I stated that people living with dementia, and unpaid carers, have rights. These are contained in Declaration of Human Rights and in the UK Equality Act, as well as in the NHS Constitution.
These rights include having our needs met, being able to lead fulfilling lives, having family life, and freedom to live as we choose. The Equality Act makes it illegal to discriminate against people who fall into the protected characteristics, which include people with long term health conditions. The NHS Constitution includes our right to appropriate treatment and care that meets our needs that result from a health condition, in this case terminal brain disease.
Taken together, these rights, which are not optional, require you as commissioners to ensure that the support and care we need as a result of our health condition, terminal brain disease, are provided.
You say you provide needs based health care. So, we have needs caused by organic, terminal brain disease. You should therefore be commissioning the care and support to meet our needs.
This is not rights based healthcare…it is needs based, backed by fundamental and legal rights, and these rights are not optional.
Historically dementia has been seen in society as a version of madness, of mental ill health, and incurable. In earlier centuries people with dementia were locked away. They also died young.
In our more enlightened times, we now know that terminal brain disease causes most dementias, and that while there are no cures there are many ways that people with terminal brain disease can be helped and supported to live as well as they can, and to have active, pleasurable family lives, engaged in their communities.
We also know there are therapies that support people living with dementia, which are backed with evidence of benefit. These include drugs that alleviate symptoms and activate healthy parts of the brain, activities that keep people’s minds active, and social prescribing approaches which keep people engaged in their communities, physically active, and which engender wellbeing. (The 5 Ways of Wellbeing.)
When people receive a diagnosis of dementia, apart from being offered a series of cognitive stimulation sessions (which have questionable evidence of success, other than as peer support), they get almost no support. If they are prescribed a drug they will be visited every six months. If not they often get no further support from the NHS or social care unless they hit crisis.
Dementia Information Support Workers, three part time in Shropshire, provide some support to a few, but most of us have nothing.
Dementia companions, included in the 2016 Shropshire Dementia Strategy, are provided only in two towns, Oswestry and Ludlow, and they work closely with some of those with a diagnosis of dementia.
Everyone receiving a diagnosis should be referred to and meet a Dementia Companion, in order to be helped to get the support they need to live as well as they can, and to cope with the emotional challenges they face. Of 4,000 people in Shropshire living with dementia, of whom 67% are diagnosed, only around 150 are receiving meaningful support from a dementia companion.
We know that families and supportive friends who provide unpaid care for people living with dementia find their work exhausting and emotionally shattering, and that they find the care system almost impossible to navigate to get help. When these groups of people reach crisis point they need expert help, in the form of Admiral Nurses. But while Admiral Nurses work in Telford and Wrekin, you do not commission them in Shropshire. So a Telford person in Shrewsbury Hospital can get support from an Admiral Nurse, but Shropshire people cannot. This is discriminatory. Indeed, a political, artificial border between one area and another cannot be used to allow health needs and legal rights to be met on one side and not on the other.
To summarise, people living with dementia have needs that result from their terminal brain disease. These needs are similar wherever they live, and are not determined by geographical or political location.
The CCG has a legal and constitutional duty to provide care which meets the health needs of people living with dementia and is failing to do so in Shropshire. Our needs in Shropshire are the same as those of people in Telford, yet the care they receive is greater. This is illegal within the meaning of the Equality Act, and fails to meet the principles enshrined within the NHS Constitution.
The CCG cannot hide behind their statement about providing needs based care, rather than rights based care. We all have needs caused by terminal brain disease but in Shropshire you are choosing not to meet these needs.
I end with this question: when will Shropshire CCG work with people affected by dementia to co-produce the services we need? There is precious little evidence of any sustained effort to do this at present, or in recent years. While the 2016 strategy document was co-produced to an extent, preconditions were laid down which prevented open consideration of all possibilities.
There is nothing to be afraid of. We will work with you, and help you, and we will not ask for millions to be spent; simply to provide the services we need to overcome the difficulties caused by terminal brain disease.
If you provide the relatively modest but appropriate support we need you will reduce hospital admissions, GP consultations, and early admission to care homes. You will reduce the stress on unpaid carers.
Meet us, talk to us, listen to us.