Rights V Needs

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.

Dr J………

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.

Yours sincerely,

George Rook

Be a game changer

It’s over for another year.

Thanks to the organisers and sponsors, who make sure so many of us can attend, and the organisations like the DEEP Network and Dementia UK who pay for our travel and hotels.

Thanks to the weather gods for tipping me the wink to leave early and avoid floods and cancelled trains.

Thanks to the wonderful helpers and facilitators who are just there when you need them, with a smile, support and kind words.

This year I felt incredible energy and enthusiasm, and passion, to make change happen.

I loved hugging my wonderful friends, and making new ones.

And I come away with renewed determination…

To kick down doors.

To disrupt cosy meetings.

And to make those who should know better do better.

I have always known that much of what we say and hear at Congress is preaching to the converted. But lots of people this year said that after sessions they felt renewed and invigorated to continue our struggle and our campaigns.

So Congress definitely works.

And it was the smaller sessions that were powerful, and which could have been on the main stage. But then the audience would have been distant and discussion limited.

Perhaps fewer, bigger, side sessions? Perhaps repeated, to allow everyone to attend in turn?

The venue was light and convenient, apart from the lift confusion! But I did find the big hall too dark and the sound system difficult to hear clearly. Or was it just the (poor) style of delivery?

Much better than that awful hotel in Brighton, with stairs you fall down, uneven floors, and dark lighting.

What did I learn?

That there is no public record or celebration of hospitals that are or may be doing good things for their patients with dementia. Apparently to list any would be to accredit them and risk discredit if CQC then criticised the hospital. Oh God!

There is a growing number of people who love with dementia who are able and willing to speak up in public and to campaign for change. It is wonderful to witness this growing social movement.

The next great step is to find decision and policy makers, local and national, and break down the barriers they erect around themselves. Like the environment protestors, we must sit down in the roads, glue ourselves to committee doors, interrupt meetings, shout it out…we will not stand for this any longer.

Make them uncomfortable. Make them squirm. Hit them where it hurts…in their heart. Make them feel guilty.

They accepted their jobs and they take their salaries. It is not acceptable for them to say it’s not their fault. There is no money.

Make a stand for what you believe is right.

So let’s get out there, wherever we live, and make our voices heard.

We each have a legal and human right to equity of care and support to live our lives as we choose, as well as we can. Our rights are not optional. They are inalienable.

We can (and do) do a lot ourselves, and we do it well. But everyone of us needs support now and then, and more so as our terminal disease develops.

And those friends, neighbours and family who help us need support too. Or they break.

DEEP groups empower people affected by dementia to speak up, to tell ‘professionals’ about the reality, and about what they need. With 140+ groups now there is huge social power to demand change, especially at local levels.

Take no notice of those who claim that dementia means you cannot do this.

Ignore the professionals who think people with dementia who speak up are wrongly diagnosed.

Stand up and prove that you still have your strength and your life experience and your skills. Brain disease rarely takes everything away, and not for many years.

Keep on going now. Do what matters, and what makes you feel good.

Be a game changer.

I thought I would give a heads up for my Dementia UK Congress speech on Wednesday.

I know many who look at my blogs may not be attending, and others will choose different sessions on the day. And, well, I just want to get this OUT THERE.

We need to work together.

All of us.

To get what we all want.

A consistent model of diagnosis, care and support for people affected by dementia across the UK.

Care that does not depend on where you live.

Support which is tailored to meet your needs, not those of others, or guessed at by a manager at a desk.

And health and care staff who are ALL fully trained (level 2) in how to support people, living with dementia.

As I write there is another outbreak of canceritis. Liver cancer death increases this time. And yes, they need attention. And much of that needs to be a proper, effective public health approach which provides alternatives to excessive alcohol consumption.

But I am not going to preach on this, as I live in a greenhouse.

No, what gets me, more each week that passes, is the utter refusal or inability of many healthcare commissioners and managers to (want to) work to really provide good, appropriate support for people living with dementia.

Commissioners cannot possibly (or legally) argue that dementia is a local issue with a need for local tailored solutions for their own CCG, ie that dementia in one CCG justifies more support than in another.

Dementia in general varies very little, and then only due to population demographics. Thus, Shropshire should be spending more than average on dementia related support and care. But no…not in this particular wood neck.

People are paid sizeable salaries to manage our healthcare systems, and to ensure that within available resources, and making best use of these, the population is provided with the best possible care.

So I find it utterly repulsive that in some areas we who are affected by our or others’ dementia are ignored, pushed out of the door, and locked out of participation and discussion.

As someone else is recorded as saying,

If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?

Do we not have a disease?

Do we not warrant care and support?

Liver cancer? Oh God! Yes, we must get on with improving diagnosis and treatment, now, goes the cry. Again. Canceritis.

But, back to working together.

There are many organisations in the third sector that work to raise awareness about dementia and to improve support and care. I will not list them here, even if I could.

But I am struck that some notable ones find it hard to agree to work together. There is a sort of charity testosterone that flows through some organisations which creates misplaced arrogance and competitiveness and prevents partnership.

There are of course the requirements of charitable status and aims. There are also the Daily Mail front page fears, which can create severe risk aversion.

And of course there is the need to create good data on beneficiaries and achievements for the next funding application.

But come on folks, we are pretty much all working for the same thing. Aren’t we?

The best support and care that meets the needs of people affected by dementia?

Every good idea needs to be supported.

Every effort to influence change supported, added to.

And no claims that our idea is best and the only one we will support, or nicking others’ ideas!

Who should we put first?

Who should be at the head, the centre and the whole of what we all do?

Not our trustees, not our staff, not ourselves.

Not our targets, not our funders, not our commissioners.


Those for whom we exist, people living with dementia, and those providing unpaid care.

You are saying I am unrealistic and unreasonable.

That I am living in a precious, intellectual bubble not of this world.

Looking through rose tinted spectacles.

Well, yes and no.

I have worked for a very large charity, and I know how they get stuck in their institutional ruts, and find other people’s ideas hard to swallow. And I know about targets and funders.

And I know that the best trustees want to bend and flex to meet beneficiaries’ needs. And most staff want this too.

I know that there are organisations out there that want to work together. And others that are frightened or arrogant.

So let’s do something about this.

Let’s work together, join forces, harness all our combined passion and resources.

Let’s get change.

Let’s put those who need us before our own needs.

Because if we all work together we will win… for those who need us.