definite answers to some questions. We will therefore try to outline what we believe to be the general or usual situation, but ask you to refer to organizations in your own local area for details of provision, entitlement and charging.
If money is not a problem, you can remain as a private patient and retain these advantages. However, it is important to remember that treatment is likely to continue for the rest of your life and that the cost may become a very heavy burden. Many specialists will arrange a transfer to their NHS list for people who choose a private first appointment just to obtain a diagnosis and begin treatment.
In some places there are now NHS Parkinson’s or neurocare clinics which offer, in addition to medical consultation, access to other members of the health team such as Parkinson’s Disease Nurse Specialists, counsellors and therapists. Geriatricians also tend to have access to these other health workers so, in some circumstances, there could be advantages in not being a private patient.
What are Patient Advice and Liaison Services (PALS)?
All trusts running hospitals, GP practices or community health services have a Patient Advice and Liaison Service (PALS). These are akin to the customer service desk of the NHS and are designed to offer on the spot help and information such as local health care services and support agencies (including a local branch of the PDS), as well as practical advice and support, with the aim of resolving any problems or difficulties that you may experience while using any NHS services, or if you simply don’t know where to turn. PALS also deal informally with concerns expressed (rather than complaints) about all services within the realms of the PCT and send anonymous reports up to the Board of the Trust about what patients are saying about services. The only thing that PALS cannot do is act as an advocate. They don’t deal with complaints per se but can tell patients about the NHS complaints system, including details of the local Independent Complaint Advocacy Services (ICAS), which can support people who are making a formal complaint. PALS cannot get involved in a formal complaint.
The PALS service is about giving patients and carers a voice;
both in their own care and in the way local health services are run. In order to do this, PALS will record any comments or suggestions you wish to make, and feed them back to the system
to ensure that the right lessons are learned and steps taken to tackle problems in order to improve the NHS service.
Your GP surgery or Primary Care Trust should be able to put you in touch with your local PALS.
I would like to see a specialist but my GP refuses to refer me. Can I insist?
There is a widely held belief that you have an absolute right to see a specialist but this is not so. Our understanding is that you have the right to be referred for a second opinion if you and your GP agree that this is desirable (our emphasis).
In reality there are things that you can do to increase your chances of being referred. It is helpful to explain fully to your GP why you feel a referral is necessary and to discover the reason for refusal. Usually a GP will think it is reasonable to have the diagnosis and management of Parkinson’s confirmed by a specialist. Take a relative or friend with you if you feel that you need moral support or someone to speak for you.
If, having exchanged views, your doctor continues to say ‘no’
and you still want to pursue the matter, all general practices have an internal complaints system. You would need to talk to the practice manager at your GP surgery to find out how this works.
It is important to find out why the referral is being refused, as sometimes lack of neurology services in the area can be a factor.
If this does not resolve the issue, each local authority has procedures for dealing with complaints. The Patient Advice and Liaison Service (PALS) for the Primary Care Trust (PCT) that your GP surgery belongs to should be able to advise you further on any steps that you can take to pursue this further. (See the previous question and a later one on the role of PCTs and PALS).
PALS can also put you in touch with the Local Independent Complaints Advocacy Services (ICAS), which can support people who are making a formal complaint. The Patients Association also has a useful booklet called Making a Complaint (see Appendix 1 for contact details).
Some people find that changing their GP can solve this problem, as a different one may sometimes be more sympathetic.
However, this cannot be guaranteed, and the pros and cons of such a move need to be carefully considered, especially if, in general, you like your GP and the practice, or it is conveniently situated. Some GP surgeries have closed lists and, if the one you want to change to does, they can refuse you. You then have to apply to the PCT who will allocate you to a GP and it might be that you are allocated to your current one who refused you, or to one that might be less convenient to get to. If you are allocated by the PCT to a GP surgery, they have to accept you. PALS can access information about whether particular GPs have closed books and the allocation process.
Although you have no right to be referred to a specialist, you do have a right to be registered with a GP and to change to another one without giving a reason. Your Primary Care Trust can advise you further about this. (Contact details should be in your local phone book or your GP surgery should be able to provide them. If you have web access, many Primary Care Trusts have websites.)
I have seen a few news items about Parkinson’s Disease Nurse Specialists. What are they?
Nurse specialists are a fairly new concept in nursing but they have emerged in several fields in recent years, most notably with the Macmillan Nurses who care for people with cancer. Other nurse specialists work with people who have diabetes, people with asthma, those with bowel and bladder problems and – quite recently, as you note – people with Parkinson’s. All nurse specialists have a general nursing training, plus additional qualifications and experience in their chosen specialist field.
Parkinson’s Disease Nurse Specialists have extensive knowledge about Parkinson’s and the drugs used in its treatment, and they work closely with those who have Parkinson’s, their carers and other health professionals.
The first Parkinson’s Disease Nurse Specialist was appointed in 1989 in Cornwall, and since then, the need for specialist nurses to work with people with Parkinson’s and their families has become increasingly apparent. There are currently 120+ Parkinson’s
Disease Nurse Specialists employed throughout the UK, who generally work alongside specialists in hospital or in the community working with GPs. They are not yet available in every area but the PDS is actively campaigning for more to be appointed. See the next question for information about how you access them.
How can I get to see a Parkinson’s Disease Nurse Specialist?
Contacts with Parkinson’s Disease Nurse Specialists are usually at the clinic (Parkinson’s, movement disorders, neurological or care of the elderly) or GP’s surgery, but they can also do home visits when these are considered necessary. Depending on what other sources of help are available locally, the Parkinson’s Disease Nurse Specialist may either concentrate on a particular problem such as drug management, or may be a more general source of advice, support and contact with other services. Access to them varies depending on who employs them and how they work. In many cases, you have to be registered with a doctor that the Parkinson’s Disease Nurse Specialist works with, in order to access them.
However, in some areas the Parkinson’s Disease Nurse Specialist operates a more open access policy. To find out what is available in your area and how you make contact, you should ask your GP or specialist. The PDS helpline can also advise.
Like many new developments, Parkinson’s Disease Nurse Specialists are distributed unevenly across the UK, so obtaining access to one is something of a lottery. However, the PDS is committed to increasing the numbers of Parkinson’s Disease Nurse Specialists and improving access to them. Contact the PDS community services department for more information on this work.
I have read that exercise and physiotherapy are beneficial but my GP says physiotherapy won’t help. What can I do?
To date there have been very few clinical trials that have been undertaken with large enough numbers of people with Parkinson’s
to prove conclusively the benefits of physiotherapy intervention.
This might be what your GP is basing his assumptions on.
However, this does not mean that physiotherapy is ineffective, and anecdotally, those who have received input from a physiotherapist have stated that they have been helped in some way. The problem may also lie in what is meant by ‘help’. Your GP may mean that physiotherapy cannot cure Parkinson’s and, in that, he or she is correct.
However, you are also correct in thinking that, in most cases, exercise and physiotherapy can help by keeping your joints mobile and your muscles supple. Of course the exercise needs to be appropriate for Parkinson’s and for you personally. There are also certain strategies you and your family can be taught by the physiotherapist to overcome movement difficulties. Being more mobile and supple will mean that you feel more comfortable, and so more able to keep active and independent.
Most NHS physiotherapy departments have waiting lists, and that may be one reason for your GP’s reluctance to make a referral, but some departments do allow self-referrals so it would be worth contacting your local hospital or health centre to find out if this is possible. Some local branches of the Parkinson’s Disease Society arrange group physiotherapy sessions (see Appendix 1 for the Society’s address – they will tell you how to contact your nearest branch), and there are a growing number of private physio-therapists who run clinics and make home visits. If you choose private treatment, you will, of course, have to pay for this yourself, and some physiotherapists may have little experience of treating Parkinson’s. You also need to ensure that they are professionally qualified – look for the letters MCSP after their names. This stands for Member of the Chartered Society of Physiotherapists and means that their qualification has been accredited by the Society.
However, it could be worth having another discussion with your GP before deciding to start spending money!
You might also like to know that the PDS, working with two physiotherapists, has produced Keeping Moving, an exercise video and booklet which contains a programme of exercises for people with Parkinson’s to do at home. Contact the PDS for details of cost.
I live in a remote country village and have had Parkinson’s for 20 years. I urgently need dental treatment but have severe involuntary movements and can’t find a dentist who will accept me. How can I obtain treatment?
Your first move should be to contact your Primary Care Trust (it should be listed in your local phone book) and explain the difficulties you are having. They may know of a dentist who can treat you either in the surgery or at home. A dentist who can offer treatment under sedation (an injection given under the supervision of a doctor after which you remain conscious but relaxed) might be appropriate. If the Primary Care Trust cannot help, you can contact the British Society for Disability and Oral Health (see Appendix 1 for the address and telephone number). They keep a list of dentists interested in treating people with Parkinson’s and will try to identify someone for you. Another option might be referral by your dentist or doctor to a dental hospital where inpatient treatment, perhaps under anaesthetic, could be provided.
Living in a remote village is an extra complication but all people with Parkinson’s need to take care of their teeth or dentures and to keep their mouths in a healthy condition. This is especially true if they suffer from dryness in the mouth. See the PDS publication Parkinson’s and Dental Health (B45).
My elderly mother needs her eyes retesting but I don’t drive and she is very difficult to move. Could I get someone to come and see her at home?
Yes. Many optometrists will now do home visits. The College of Optometrists has a leaflet Domiciliary Eye Care Services which provides advice on what to look for when considering this option.
If you have any difficulty finding one who will visit your mother at home, contact your Primary Care Trust who should be able to provide you with a list of local optometrists who do domiciliary eye testing. (The telephone number should be in your local phone book.) If your mother is entitled to a free NHS sight test, this service will be free but otherwise a charge will be made. See the PDS information sheet, Parkinson’s and the Eyes (FS27).
My speech is becoming less distinct and very hoarse and quiet. I think a speech therapist may be able to help. Can I refer myself or do I need to go through my doctor?
You are wise to consider getting a proper assessment of your speech difficulties and a speech therapist (or speech and language therapist as they are now called) is the best person to do this. Although most health districts suffer from a shortage of speech and language therapists, there are a growing number who have an interest in Parkinson’s, so you should certainly ask (and if necessary persist in asking) to see one. You can refer yourself by contacting the Speech and Language Therapy Department at your local hospital or health centre, but because of the changing funding arrangements in the NHS, you will have a better chance of getting this service if you get a referral from your GP.
Speech and language therapists can also help with swallowing and drooling problems if these occur.
See the PDS information sheets Speech and Language Therapy (FS7) and Communication (FS6).
Doing various tasks around the house is becoming more difficult and, as my husband is also disabled, I feel we need some good advice about what to buy, etc. Who could do this?
There are many aids and appliances that can make household tasks more manageable but you are very wise to seek advice first, as it is easy to spend money on things that are not suitable or are unduly expensive. The person who can help is the occupational therapist. Your GP, hospital specialist or Parkinson’s Disease Nurse Specialist, if you have one, should be able to refer you or you can refer yourself to your local social services department.
Some occupational therapists work from a hospital or from Primary Care Trusts and others from social services departments (there is a section on Primary Care Trusts and social services later in this chapter).
Sometimes the solution is not a piece of equipment but rather a new way of organizing your work space or of approaching a task, and occupational therapists are very skilled in these
matters. The therapist may be able to lend you equipment to try out at home or, alternatively, may arrange a visit to one of the Disabled Living Centres (see Appendix 1 for the Disabled Living Centres Council’s address – they will give you details of your nearest centre) where you can see and try some of the bigger and more expensive items.
If the occupational therapist decides that adaptations like rails or ramps are required, then he or she can make a recommen-dation to the appropriate social services department. There are many variations between areas in the charges made for these aids to daily living and, if you are worried about the possible costs, be sure to mention this to the therapist.
See the PDS information sheet, Equipment (FS59) and leaflet on Occupational Therapy and Parkinson’s (B47).
My walking, even around the house, is not good, but part of the problem is my feet which I am now unable to care for properly. How can I obtain chiropody services?
Comfortable feet are very important for mobility and indepen-dence and many people, especially those who are elderly, need access to chiropody (the term podiatry is also used, particularly in English-speaking countries outside the UK) services. People with Parkinson’s can be particularly prone to foot problems because of the difficulties that they can experience with walking, posture and foot cramps. They also sometimes have difficulty bending over to cut toenails and generally look after their feet.
You should enquire at your GP’s surgery about the podiatry services available in your area. Most Primary Care Trusts run clinics and have a domiciliary (home visiting) service for people with mobility problems, so you should be able to arrange regular appointments. It is usually available on the NHS for elderly people and people with physical disabilities that affect their feet or ability to care for their feet.
There are also private podiatrists if you are able to pay. If you do decide to see a podiatrist privately, make sure that he or she is State Registered (they will have the letters SRCh after their name). The Society of Chiropodists and Podiatrists website has a
‘find a podiatrist’ service as well as useful general information about looking after your feet. (See Appendix 1 for details.)
See the PDS information sheet, Foot-Care (FS51).
I know that people with Parkinson’s are advised to eat a balanced diet with plenty of fluids and high-fibre foods, but this is difficult for me because of a chronic bowel condition. Could I get some additional advice from a dietitian?
You are quite right about the general dietary advice given to people with Parkinson’s (see Chapter 10 for further questions on this topic), but also wise to realize that there can be exceptions to any general rule. First you should talk to your GP or specialist about the ways in which Parkinson’s and your bowel condition could affect each other. You could also explain that you want to help yourself by eating sensibly and, if the doctor is not able to offer you enough guidance, you could ask for a referral to a dietitian. Most dietitians work in hospitals but an increasing number are working in the community, and in some places you can approach them directly without going through your GP.
The PDS has two booklets which you might find helpful – Parkinson’s and Diet (B65) and Looking after Your Bladder and Bowels in Parkinsonism (B60).
My elderly father has prostate trouble as well as advanced Parkinson’s and is now incontinent at night. Who can I ask for help with the psychological and practical problems this causes?
We assume that everything possible has been done to investigate and treat the incontinence problem. If not, you should contact your father’s GP and ask for this to be done as soon as possible.
You should also ask his GP to refer him to the local continence adviser or district nurse who will assess his needs and provide advice, support and practical guidance about obtaining pads, pants and laundry services. There is also a confidential advice line run by the Continence Foundation which you can use (see
Appendix 1 for the address and telephone number). Their website also has useful information and a search facility to find continence clinics/advisers in your local area. See also the PDS publication Looking after Your Bowel and Bladder in Parkinsonism(B60) which was co-written with the Continence Foundation. A local Parkinson’s Disease Nurse Specialist (if available) could also be a useful contact for you. See questions earlier on in this chapter for details of their role.