Liaising with health professionals.

At home

The professionals you are likely to meet are the GP (occasionally), the District Nurses and, rarely, the Occupational Therapist and the people who deliver specialist equipment to the house. All these have their own rhythms, styles and ways of working so let’s review them in order.

The GP will usually come to the house only when there is a major change in the condition of the patient, often at the request of the District Nurse. For example if s/he develops pneumonia or injures him/herself falling out of bed. Most doctors are under such pressure that they simply cannot visit often; nor will they be able to give you a precise time of their visit. This can be irritating for the patient and the carers, but it is an inescapable consequence of an overloaded system. So try to be understanding…!

The GP should have the patient’s notes and therefore be up to date on current medications and so on; but it is wise to have all that information, including bowel movements, current feeding patterns, water intake and passing, state of bed-sores, cognitive ability,reported pain and sleep patterns to hand.

In serious cases, two difficult questions are likely to come up. The first is hospitalisation. GPs are increasingly ready to recognise the desire of many patients to die at home. It is therefore important to them to know the patient’s current thinking on this. (Patients can change their minds, especially if pain control is proving difficult.) Now that there is a lot of emphasis on patient-centred medicine, there may be reluctance on the part of the GP to take your word on this; he wants to hear it from the horse’s mouth. Some carers take this amiss. “He doesn’t trust me….” Yes, he does, but he has an obligation to check with the patient if s/he is well/coherent enough.

That will not, of course, be an easy conversation in some cases - and your role can feel very uncomfortable, especially if the patient is a hassle-minimiser. In extreme cases, they will tell the doctor what you know to be untrue, because they “don’t want to be a nuisance.” And that of course puts the GP in an awkward position: his training tells him to listen to the patient; his common sense tells him to listen to whoever watches most carefully and cares most deeply. Luckily, most experienced GPs are well aware of this tension and have developed their own ways of dealing with it.

The other difficult question that may come up with the GP is the DNR notice - do not resuscitate. S/he will need to know, sooner or later, whether the patient wants to be resuscitated if the need arises. Modern technology can achieve wonders; the question is whether such wonders are welcome. If the patient has already signed a DNR, then show it to the GP so s/he knows where s/he stands. More awkward is the situation where this has never been discussed with the patient - and we may well now be beyond the point at which such a conversation would be relatively easy. Again, there may be tension between what the patient tells the doctor and what s/he tells you. Hassle-minimisers will say they don’t want to cause a stir by being involved in such a procedure. Sparkier souls will want to keep all possibilities for life available - but may be embarrassed to say so. If in your judgement time permits, it may be wise to let a few days elapse before quietly raising the issue and then letting the GP know the final decision.

District Nurses are unfortunately, like doctors, seriously and serially overworked. Commonly they are given routine, regular tasks like injections, taking blood pressure, perhaps taking blood samples, inspecting bed sores, changing dressings- and that is what they do. They do not have time - as once they did - for a chat, a cup of tea and an exchange of local news. Nor are they mini-GPs, and that is where conflicts sometimes arise. They cannot, for instance, normally change a prescription or issue a new one (unless they are a qualified nurse prescriber, rarely seen on the District). Sometimes the GP will give them some discretion in matters of pain-control, but then only in the sense of adjusting the dosage. These fairly tight restrictions are here for a purpose; they protect both the Nurse and the carers. Sometimes the latter want the Nurse to exceed their limits for the good of the patient. “Go on, you can see she is in pain. You could give her something more powerful”. However understandable that reaction may be, it is not fair to the Nurse who will most likely say: “I’ll ask the doctor; it his decision. “ That is as much as it is reasonable to ask her to do.

Another, associated, possible cause of conflict is the frequency of the District Nurse’s visits. You may think your patient needs more - and you may feel more confident if there were more. As I implied above, the Nurses are usually trying to extract a quart from a pint pot. As hospitals find ways of discharging patients back into the community earlier and faster, this sense of extreme pressure is likely to increase. Some Nurses are currently carrying case loads double of what they would have carried fifteen years ago. No matter how swift and efficient they are, there are limits to the number of cases they can attend safely within their day. It is well to remember that when you are wishing she would agree to come more often.

A related point that sometimes causes difficulty: District Nurses usually work in teams for obvious reasons, That implies that there can be no guarantee of continuity of care. For a very sick or shy patient this can seem burdensome; and for an anxious carer it is irritating. The latter wants a trusting, well informed relationship with this key player and if “I never know who is going to walk through the door next”, this is unlikely to develop as it should. Again, we can only plead for patience. Rotas usually settle after a period of disturbance, but certainly those periods can seem to be going on far too long.

Occupational therapists have a key role to play in helping select mobility aids to give the patient the maximum possible independence of movement. (They will also advise on other aids such as commodes, beds and hoists.) And they take an interest in smaller seemingly insignificant matters too, like mugs that are easy for arthritic hands to hold or drawers that are easy for frail or poorly sighted people to use..

They usually try to visit the patient’s home immediately before or after they leave hospital. Indeed some Trusts will not discharge patients into a home that has not been approved by an OT. You may think some of their recommendations are a little over the top. My own experience is that they are right - and I was wrong! They have personal and institutional experience to draw upon and so my suggestion is to go with whatever they say. If some of the stuff that their suppliers deliver - usually quickly and helpfully - remains unused, it does not matter. The deliverers will repossess it when it is no longer needed and so nothing is lost. It will simply be reissued to another person in need.

There is inevitably a delay between the OT’s visit and the delivery of the equipment from the NHS store. If, when it arrives, you are not sure how it works - eg a hoist - do not hesitate to ring the OT department in the local hospital and ask for advice. They will usually know the equipment so well, they can give detailed guidance over the phone. If necessary, they will come and demonstrate. Better that than harming the patient (not impossible with a hoist) or wrecking the equipment (ditto.). In the same way if the patient finds the equipment inconvenient or imperfectly sited (eg a grab handle), let the OTs know and they will get it fixed.