1. There are big gaps in post-diagnosis
support from health and social care services, with
social care particularly singled out - two-thirds of GP’s surveyed said
patients don't get enough provision from adult social services after a
diagnosis.
2. Unpaid carers (family, friends and
neighbours) are being left to care for loved ones without the support they
need.
3. GP’s in areas that don’t have good
post-diagnosis support provision are more reluctant to diagnose people
with dementia or refer their patients to memory services for diagnosis.
Out of these
headlines I suspect that council’s will be criticised for not providing enough
social care support (which of course most councils are going to struggle to do
in the current climate of austerity and huge cutbacks), carers will be given
masses of sympathy (when in reality they would rather have action to help them not
public pity), and GP’s will be lampooned for not offering more support themselves
and not diagnosing patients who they may suspect have dementia (even though
General Practice is under more pressure than it’s ever been in the history of
the NHS).
Picking up on
the diagnosis point, however, really gets to the heart of the issue for me. When
dementia was first declared a governmental priority, the initial focus was on
improving diagnosis. Fine, you might think, it’s important we diagnose people.
Well yes, except that if you diagnose someone but offer them and their family
no support all they have is a label to hang their symptoms from and absolutely
no idea where to go next or how they might live well.
Those issues
then quickly fuel the problems that wider family networks have in providing support and care, and of course when the inevitable breakdown comes there is an
increased need to utilise health and social care services, which are often
either inaccessible, vastly
over-subscribed or have disappeared as a result of cutbacks. Even when there
is the possibility of localised support, there is often no one to help navigate
complex health and social care systems, with GP’s under immense pressure and
third sector organisations like Alzheimer’s Society, Dementia UK (Admiral Nurses) and others all needing additional funding from commissioners in
order to offer the post-diagnostic support that they are equipped to provide.
I’d like to say
there are some positives in this latest Alzheimer’s Society survey, but I can’t
see any. Yet I don’t think it should be used as a stick to beat health and
social care professionals with. That won’t help anyone, least of all the huge
numbers of families who are needing support and just not getting it. The buck
stops with government, and as I wrote about in the run up to the last election,
I fear that many of our politicians just don’t understand the importance of social care and, whilst most are very sympathetic towards carers, the needs
carers have - particularly around financial issues, access to training, equipment
and breaks - are never comprehensively addressed in legislation.
Proper
integration of health and social care services, rather than piecemeal promises,
a decent carer’s allowance, legally enshrined employment protection for carers
who are working alongside caring, freely available training and access to
equipment and personalised breaks to help carers, and of course those
all-important post-diagnostic services that aren’t subject to a postcode
lottery and are personalised, innovative, flexible and based on best practice, are what people with dementia and their families need, and
frankly have needed for as long as I can remember.
I have repeatedly
argued that resolving any potential shortfall in diagnosis is intrinsically linked to post-diagnostic support. More people will come forward with potential
dementia symptoms if they feel their local services are ready and willing to
help them, and GP’s will naturally have more confidence with the diagnostic
process if they know that the best interests of their patients will be served
by giving them access to the care and support that they need. The key point here, though, is that the care and support actually needs to exist!
Allowing diagnosis
and post-diagnostic support to get so compartmentalised was a huge mistake
that’s leaving more families than ever before to pick up the post-diagnosis
pieces alone. I suspect that diagnosis was seen as a ‘quick win’ in terms of
statistics – by adopting case-finding in hospitals and GP’s surgeries, people
who were developing dementia symptoms were always going to be
identified in higher numbers than before such an exercise began.
Diagnosis was a
major theme in the 2009 Dementia Strategy, and again in the 2012 PM Dementia Challenge, yet in 2015 whilst diagnosis rates have increased to a more
‘politically acceptable’ level, the personalised support that MUST follow that
diagnosis is something many parts of the country are still trying to design,
and that’s before they even progress to funding and implementation.
To say this gap
in post-diagnostic support angers me would be a bit of an understatement. When
my dad was diagnosed, long before strategies and PM challenges, we had about as
much support as many families do now. In other words, nothing. The only
advantage families have now, as far as I can see, is that with improved
awareness of dementia has come a wealth of online and paper-format resources, more helplines, and the
hope that with increased political focus will come the action that is so badly
needed.
If I could find
one chink of light at the end of the tunnel, and it’s stretching a point a very long way, it’s that dementia
has come out of the shadows. That, however, is pretty scant consolation for
families affected by dementia who feel isolated and unsupported, and whose
loved ones living with dementia could be living so much better if only they had
access to expertise, advice and support.
Closing the gap between diagnosis and
post-diagnostic support must happen, and it must happen quickly.
You can follow me on Twitter: @bethyb1886
