A06 in centre haemodialysis 2014.
Dr Clara Day
Lead for haemodialysis, University of Birmingham NHS Trust
Summary:
I think in general this is a well written specification. I have some comments as below which may help
to help ensure same standards within any provision commissioned from independent sector provide
the same level of care as the NHS units. I also have some concerns about some of the measures
proposed as audit which are detailed.
Section 1: population.
This is well written and structured. The figures for 2012 are now available from the renal registry and
could be inserted.
Section 2: NHS Outcomes and domains
I understand the political imperative for inclusion of this section. This is sensibly written in a
structured format.
My only comments would be:
1. Ensuring the opportunity for patients to share (contribute) to their care by
education to enable them to participate in the tasks relating to haemodialysis
treatments if they should want to.
2. Ensuring effective communication and support between patients, families/carers
and the service providers and primary care.
Section 3: Scope
I think in general this is a well written, very reasonable specification for in-centre haemodialysis care.
I have a few comments as below.
1. That the design and staffing of the centre meets the requirement to isolate
patients using a dedicated dialysis machine when returning from dialysing in
areas with high risk of blood borne virus transmission or for those patients requiring
dialysis in isolation eg hepatitis B sAg positive.
I don’t know whether you also need to comment that if patients go to high risk areas they may not
be able to return to their previous slot or centre for their period of isolation. As long as all attempts
are made to get patients as close to home as possible, it is unrealistic to expect most units to have
enough flexibility in side room use to allow free choice of slot and location on return.
2. Providers must offer education about access to self care training for patients
interested in contributing to their management by participating in the tasks
relating to haemodialysis treatment. In particular, this should include the
opportunities for health gain offered by self-care either in the dialysis facility itself
or by carrying out more frequent haemodialysis/peritoneal dialysis treatment in
the home.
I think that all of us accept that shared care / self-care dialysis (whether at home or in-centre) is a
good choice for an interested patients. My concerns are that:
a. We need to be careful about overstating the evidence base. I am not sure of anything robust
suggesting marked health gain for self-care (or shared care) in centre unless dialysis
frequency is increased. It almost certainly makes people feel a bit more engaged but I feel
some caution is needed at this point. Quoting unproven benefits will only make sceptics less
likely to engage.
b. We need ideally to state that staff must be supported and educated to take on this role.
There is nothing worse for patients than being really keen and this not being followed
through as staff are lacking enthusiasm, training on how to train or support from managers
to provide the training required for in-centre training of patients.
c. We need to emphasise at all times that shared care / self-care must only be if the patient
chooses. I have heard of units planning to have a certain number of patients on shared care
in order for them to be able to reduce overall staffing ratios. This obviously is not ideal.
3. Ensure clear arrangements are in place for continuity of care which requires
identifying the nephrologist responsible for each patient’s management. There
are arrangements whereby all patients have access to a multi-professional renal
team for regular review and for also for ad-hoc input into their care.
I think that you could take this further and specify need for regular senior medical review. I
personally would favour this as being at consultant level (which may be unpopular), at their
unit (whether that be satellite or MRU) and at a convenient time for the patient ie around
their dialysis sessions if possible. I am not sure that this happens regularly for all patients
(say every 4-6 months as routine but within a month of starting and more frequently if
medically needed and following recent hospital admission). This would be pretty
controversial I guess but in nurse led satellite units I feel this is very important. I agree
entirely with a named consultant.
4. The provider will have in place a protocol for ensuring vaccination against
hepatitis B virus, delivered in primary care
We have control of our own hepatitis B vaccination programme and I can’t imagine that we are
the only ones. We are in a high risk area and found that we have much greater control over the
process if we do ourselves with dialysis nurses trained to vaccinate. I think you need to give the
option of either primary care or within the unit but emphasising patient convenience and
ensuring adequacy of the process.
5. The provider will ensure that all patients in MRUs, and satellite units, should
be included in the clinical governance (CG) processes of the MRU. By
embedding CG within day to day operations there should be a commitment
to monitoring clinical quality and outcomes. Delivery of care must be safe,
timely, effective, efficient, equitable, patient centred and sustainable>
I would consider adding a comment about independent providers and the monitoring of
performance against KPIs including standard of clinical governance. We have learnt the
hard way that this is very important to specify upfront in any agreement with the provider.
Any such agreement then needs close monitoring with regular meetings with the provider
to ensure that the Trust is happy with the, generally self-assessed, information provided for
KPI and that governance processes are equal to the Trust. Perhaps something along the
lines of: if the Trust contracts out dialysis services to an independent provider, an
agreed monitoring system of key performance indicators and clinical governance
processes should be in place to ensure that patients receive equal care to that
within the Trust itself. This contract should be monitored at least quarterly with
multidisciplinary meetings between the two organisations.
6. Social work support
The provider will offer patients access to social work advice as required.
Somewhat controversially some units (ourselves included) have moved away from using a
‘social worker’ to employing specialist welfare advisors who we and others feel can address
the most frequent queries of this group. Perhaps some rephrasing?
The provider will ensure access to all patients to specialist advice on social and welfare
matters.
7. Psychology services. The provider will offer patients access to psychology
services as required.
Again I will make a somewhat controversial comment…. This is obviously written by a
psychologist. There are however alternative professionals to offer psychological support. It may
therefore be worth rephrasing to something like:
The provider should ensure access to a service providing specialist psychological support. ….this
service should provide… intervention for patients, their carers and families as well as clinical
supervision for direct care staff, training on aspects of psychological care, input to service
development and clinical governance and consultation as well as conducting research, audit and
service evaluations.
8. Training to become self-supervised on mobile haemodialysis machines should be
offered so that patients can travel freely in the UK, Europe and overseas.
This statement makes me very uncomfortable. At present there is only the NXStage machine on
the market. It is mobile in the sense that it can be moved but not that easy to travel with. In
addition it would provide a significant cost pressure to units. By including this, NHS England is
giving NXStage a significant commercial boost.
In addition, this is a specification for in-centre patients; will there be one machine for the
dialysis programme? Several? Enough for everyone who wants to go away? How are we going to
ensure that they are always up to date with training if not using regularly? How is the unit going
to fund intermittent use of a machine?
When there is access in the UK to a competitive market of portable machines with a price that is
reasonable this may be an option but I really feel that we have not reached this point and
including this in the specification at this point is unrealistic and may mean that in order to be
able to provide this for a small group of patients, the unit may have to choose not to fund
services benefiting the entire in-centre population.
Appendix 1: Quality standards.
I recognise the need to measure the implementation of the specification beyond selfcertification by Trusts. Measures used must therefore be accepted as relevant, unambiguous
and not overly difficult to collate. My comments on individual measures are included below.
Domain 1:
To reduce the incidence of MRSA and MSSA bacteraemia related to vascular access
this last phrase is crucial but may well be open to gaming…..as we all know, sometimes
bacteraemias are obviously line or needling related; sometimes they are not and may be related
to being very itchy or other skin lesions. I suspect you may need to think about classifying
specifically otherwise suddenly all will not be access related (or include them all and specify
whether line present, patient button holes…)
No more than one bacteraemia per 25 patient years of receiving treatment
is this the same as the RA guideline measure? MRSA and MSSA separate or together?
Number of bacteraemia per 100 patient years receiving treatment.
Domain 2:
This seems reasonable. Some may dispute the ‘changing to home dialysis’ section citing
significant percentage choice of home therapies as initial modality. It should therefore probably
also be counted in the opposite direction ie significant technique failure of home dialysis
(excluding transplantation / death).
Domain 3: ensuring patient are informed and involved in their care.
Measurement: % of patients who are able to undertake a minimum of 5 tasks related to
their haemodialysis treatment independently.
I accept entirely that involving patients in aspects of self care is important for those who wish to
do it. I also accept that tricky to measure. My concerns with this measure are:
1. Some patients may well not want to do. As long as this has been discussed with them
and there exists a culture within the unit where the nursing staff are trained,
enthusiastic and supportive of self and shared care then this should be acceptable.
2. Encouraging 5 measures is easy to measure but may be a bit ‘tick box’ and like GCSE
grade debates; do you not want to be in the situation where you can encourage the
more able to do as much as they want rather than focussing on making everyone do 5
things? Ideally you could do as much as was wanted.
3. This focusses very specifically on tasks as evidence of involvement and education. One
could argue that properly understanding the importance of interdialytic weight gain,
correct diet, why time is important, why it is good to have a fistula if possible, how to
prevent infection are just as important as being able to measure BP and weigh oneself.
4. What might be needed is a good national (properly validated…)patient reported
measure here which evaluates satisfaction with the education provided and the level of
support for self-care within the unit in addition to the patients desire to do more (or
indeed less…)
Domain 4: ensuring people have a positive experience of care
1. Patient and carers survey on quality of service
yes very reasonable to do annual survey (although these are generally not easy to write;
as above a national, validated and agreed, patient friendly measure of patient
satisfaction with several aspects of care would be very useful )
together with satisfaction of choice of RRT
I am not sure that this is possible; patients only have experience of their current or
previous method of RRT and any dissatisfaction in this measurement may well be related
to general dissatisfaction with ESKD and need for RRT rather than dissatisfaction with
choice. One could ask; would you have preferred another option of RRT that wasn’t
offered to you but again…there are reasons why patients cannot have a transplant,
CAPD or indeed HHD which are not solvable and thus very difficult to measure sensibly.
and patient reported health related quality of life.
This is important but as yet we do not have a sensible validated tool to use for this. The
EQ5D is the DoH preferred method of ‘quality of life’ measurement (as it can be used to
calculate Qolys) but not terribly useful for everyday use. If what is meant in this case, is
an ability to measure patient reported outcomes (PROs) in a structured manner, eg pain,
itching, nausea, depression, then tools are in development for use within the dialysis
population for measurement such as the POSS-s renal. However these are not yet fully
validated within the UK renal population for routine use. Moreover, measurement and
reporting annually is interesting but of little use to patients; what needs to be done, is
that PROs are collected in a structured and validated manner to aid discussion with the
patient to improve their daily quality of life.
2. Number and % of patients with access and instruction in use of RPV. Reasonable.
3. Number and % of patients using shared decision making aids / actively involved
in shared decision making.
This is tricky. We would all agree (I would hope) that patients, if they wish to be, should
be actively involved in decision making. However, as with PRO tools, there are no agreed
and fully validated shared decision making aids which can be used for the complex
decision of dialysis modality choice (which I am assuming is what is being referred to in
this section although unclear within this population who are already on incentre
dialysis). This requires extensive support from a very skilled and experienced MDT,
personally tailored to each individual’s circumstances. Boiling this down to use of shared
decision making aids is somewhat reductive and risks allowing reduction in the number
of skilled staff to provide this role. I really don’t think this is a usable measure.
For this domain I would suggest sticking for the moment with a (unit developed) annual survey
of patient satisfaction with care along with an improvement plan. Development of a national
patient survey would be very beneficial. When an agreed and validated PRO measure has been
developed it should be used to enhance control of patient symptoms within everyday care. This
should be voluntary (but good practice) until this time.
Domain 5: Treating and caring for people in a safe environment and protecting
them from avoidable harm
85% of patients with a fistula/graft of all haemodialysis patients.
This is unrealistic for many units and therefore not a terribly helpful measure. I would again go
for access at 90 days in HD patients and then action plan required if in bottom quartile / tertile.